Publications
2023 Open
2023 Close
| Author(s) | Kallesøe, Sarah A. Savic, Tian Rabbani, Erin E. Gill, Fiona Brinkman, Emma J. Griffiths, Ma’n H. Zawati, Hanshi Liu, Nicole Palmour, Yann Joly, and William WL Hsiao. |
| Title | Canadians’ opinions towards COVID-19 data-sharing: A national cross-sectional survey |
| Reference | BMJ Open 13, no. 2 (2023): e066418 |
2022 Open
2022 Close
| Author(s) | Patrinos D., Knoppers B.M., Kleiderman E., Rahbari N., Laplante D.P., Wazana A. |
| Title | Re-contact Following Withdrawal of Minors from Research |
| Reference | 5:1 (2022) Canadian Journal of Bioethics, 45-53. |
| https://doi.org/10.7202/1087202ar |
| Author(s) | Regev A., Teichmann S., Majumder P., Mhlanga M., Shalek A., Guigó R., Knoppers B.M., Wold B. |
| Title | The Commitment of the Human Cell Atlas to Humanity |
| Reference | (2022) OSF, 1-5. |
| Author(s) | Bernier A., Molnár-Gábor F., Knoppers B.M. |
| Title | The international data governance landscape |
| Reference | 9:1 (2022) Journal of Law and the Biosciences, 1-45. |
| Author(s) | Rothstein M.A., Zawati M.H., Thorogood A., Beauvais M.J.S., Joly Y., Brothers K.B., Lang M.B., Andanda P., Ho C., Isasi R., Kaye J., Lee W.B., Nnamuchi O., Saltzman A., Knoppers B.M. |
| Title | Streamlining ethics review for international health research |
| Reference | 375:6583 (2022) Science, 825-826. |
| Author(s) | Ahmed S., Lévesque E., Garland R., Knoppers B.M., Dorval M., Simard J., Loiselle C.G. |
| Title | Women's Perceptions of PERSPECTIVE: A Breast Cancer Risk Stratification E-Platform |
| Reference | 20:8 (2022) Hereditary Cancer in Clinical Practice, 1-9. |
| Author(s) | Driver H.G., Hartley T., Price EM., Turinsky A.L., Buske O.J., Osmond M., Ramani A.K., Kirby E., Kernohan K.D., Couse M., Elrick H., Lu K., Mashouri P., Mohan A., So D., Klamann C., Le HGBH., Herscovich A., Marshall C.R., Statia A., Care4Rare Canada Consortium, Knoppers B.M., Brudno M., Boycott K.M. |
| Title | Genomics4RD: An integrated platform to share Canadian deep-phenotype and multi-omic data for international rare disease gene discovery |
| Reference | (2022) Special Issue for MatchMaker Exchange: Human Mutation, 1-12. |
| Author(s) | Harding R.J., Bermudez P., Beauvais M., Bellec P., Hill S., Knoppers B.M., Pavlidis P., Poline J.B., Roskams J., Stikov N., Stone J., Strother S., CONP Consoritum, Evans A.C. |
| Title | The Canadian Open Neuroscience Platform – An Open Science Framework for the Neuroscience Community |
| Reference | (2022) OSFPreprints (Preprint). |
| Author(s) | Lambert D.M., Patrinos D., Knoppers B.M., GenCOUNSEL Study, Zawati M.H. |
| Title | Genetic counselors and legal recognition: A made-for-Canada approach |
| Reference | 31:1 (2022) Journal of Genetic Counseling, 49-58. |
| Author(s) | Kleiderman E., Rahimzadeh V., Knoppers B.M., Roy M.C., Laberge A.M., Ravitsky V. |
| Title | The Serious Factor in Expanded Prenatal Genetic Testing |
| Reference | 22:2 (2022) The American Journal of Bioethics, 23-25 |
| Author(s) | Huerne K., Palmour N., Wu A., Beck S., Berner A., Siebert R., Joly Y. |
| Title | Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing |
| Reference | 5:2 (2022) The CRISPR Journal, 1-10 |
| Author(s) | Saulnier K., Bernier A., Liosi S., Earp B., Berrios C., Dyke S.O.M., Dupras C., Joly Y. |
| Title | Studying Vulnerable Populations Through an Epigenetics Lens: Proceed with Caution |
| Reference | 5:1 (2022) Canadian Journal of Bioethics, 68-78 |
| Author(s) | Song L., Liu H., Brinkman F., Gill E., Griffiths E., Hsiao W., Savi?-Kallesøe, Moreira S., Van Domselaar G., Zawati M.H., Joly Y. |
| Title | Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Metadata in a Public Repository during the COVID-19 Pandemic |
| Reference | 12:716541 (2022) Frontiers in Genetics, 1-10. |
| Author(s) | Lang M., Zawati M.H. |
| Title | Returning individual research results in international direct-to-participant genomic research: results from a 31-country study |
| Reference | (2022) European Journal of Human Genetics, 1-6. |
| Author(s) | Patrinos D., Knoppers B.M., Laplante D.P., Rahbari N., Wazana A. |
| Title | Sharing and Safeguarding Pediatric Data |
| Reference | 13 (2022) Frontiers in Genetics, 1-6. |
| https://doi.org/10.3389/fgene.2022.872586 |
| Author(s) | Longstaff, H., Flamenbaum, J., Richer, E., Egar, J., McMaster, C.R., Zawati, M.H. |
| Title | Core elements of participant consent documents for Canadian human genomics research and the National Human Genome Library: Guidance for policy |
| Reference | 194:44 (2022) Canadian Medical Association Journal, E1500-1508. |
| Author(s) | Trost B., Thiruvahindrapuram B., Chan A.J.S., Engchuan W., Higginbotham E.J., Howe J.L., ... Zawati M.H., et al. |
| Title | Genomic architecture of autism from comprehensive whole-genome sequence annotation |
| Reference | 185:23 (2022) Cell, 4409-4427. |
| Author(s) | Patrinos D., Lang M., Zawati M.H. |
| Title | Data Governance |
| Reference | In Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine, eds. Mccormick, J.B., and Jyotishman, P. (Elsevier, 2022). |
| Author(s) | Brinkham F., Gunter M., Arancibia R., Bourque G., Dewar J., Di Palma F., Diverty B., Glazier R., Hambuch T., Hutchinson P., Lambert S., Latimer J., Lee D., Croker A., Leggott M., Maybee A., McGrail K., McMaster C., Menec V., ... Zawati M.H., et al. |
| Title | Enhancing Canada's Population Cohort Environment: Recommendations of the Pan-Canadian Population Cohorts Working Group |
| Reference | Prepared for the Genomic Canada Science and Industry Advisory Committee and Canadian Institutes of Health Research Science Council. (September 2022). |
2021 Open
2021 Close
| Author(s) | Pastorino R., Lang M., Zawati M.H., Calabrò G.E., Hoxhaj I., Houwink E.J.F., Sassano M., Boccia S. |
| Title | Ethico-Legal and Policy Issues Surrounding Personalised Medicine |
| Reference | (2021) Personalised Health Care: Fostering Precision Medicine Advancements for Gaining Population Health Impact, 57–76 |
| Author(s) | Knoppers B.M., Beauvais M.J.S. |
| Title | Basta con il biolaw: What about knowledge and trust? |
| Reference | 1:21 (2021) BioLaw Journal - Rivista Di BioDiritto, 17–21.
|
| https://teseo.unitn.it/biolaw/article/view/1664/1668 |
| Author(s) | Beauvais M. |
| Title | The Public Interest and the GDPR |
| Reference | 2021 Global Alliance for Genomics & Health GDPR Forum |
| https://www.ga4gh.org/news/ga4gh-gdpr-brief-the-public-interest-and-the-gdpr-february-2021/ |
| Author(s) | Beauvais M.J.S., Thorogood A., Szego M.J., Sénécal K., Zawati M.H., Knoppers B.M. |
| Title | Parental Access to Children’s Raw Genomic Data in Canada: Legal Rights and Professional Responsibility |
| Reference | Frontiers in Genetics 12 (2021). |
| https://doi.org/10.3389/fgene.2021.535340 |
| Author(s) | Beauvais M.J.S., Knoppers B.M. |
| Title | Coming Out to Play: Privacy, Data Protection, Children’s Health, and COVID-19 Research |
| Reference | Frontiers in Genetics 12 (2021). |
| https://www.frontiersin.org/articles/10.3389/fgene.2021.659027/abstract |
| Author(s) | Wu Y., Marc I., Bouchard L., et al. (including Knoppers B.M., Zawati M.H.) |
| Title | Study protocol for the Sino-Canadian Healthy Life Trajectories Initiative (SCHeLTI) |
| Reference | (2021) 11:4 JBM Open, 1-12. |
| Author(s) | Beauvais M.J.S., Knoppers B.M., Illes J. |
| Title | A Marathon, Not a Sprint – Neuroimaging, Open Science and Ethics |
| Reference | NeuroImage, April 20, 2021, 118041. https://doi.org/10.1016/j.neuroimage.2021.118041.
|
| Author(s) | Beauvais M.J.S., Sénécal, K., Fernandez C.V., Sinnett D., Rahimzadeh V., Knoppers B.M. |
| Title | Frontline Ethico-legal Issues in Childhood Cancer Genetics Research |
| Reference | In The Hereditary Basis of Childhood Cancer, edited by David Malkin. Cham, Switzerland: Springer International Publishing, 2021.
|
| Author(s) | Knoppers B.M., Beauvais M.J.S. |
| Title | Three decades of genetic privacy: A metaphoric journey |
| Reference | Human Molecular Genetics, no. ddab164 (June 21, 2021).
|
| https://doi.org/10.1093/hmg/ddab164 |
| Author(s) | Bouthillier D., Zawati M.H., Joly Y. |
| Title | Personalised Medicine – Introduction to the Technology |
| Reference | (2021) Lexis Nexis, LexisPSL practice note. |
| https://www.lexisnexis.co.uk/legal/guidance/personalised-medicine-introduction-to-the-technology |
| Author(s) | Beauvais M., Molnar-Gabor F. |
| Title | The Role of the European Data Protection Board in Interpreting the GDPR |
| Reference | Global Alliance for Genomics & Health GDPR Forum (2 August 2021) |
| https://www.ga4gh.org/news/ga4gh-gdpr-brief-the-role-of-the-european-data-protection-board-in-interpreting-the-gdpr/ |
| Author(s) | Vodosin P., Jorgensen A.K., Mendy M., Kozlakidis Z., Caboux E., Zawati M.H., and on behalf of the BCNet members |
| Title | A Review of Regulatory Frameworks Governing Biobanking in the Low and Middle Income Member Countries of BCNet |
| Reference | (2021) Biopreservation and Biobanking, Preprint. |
| Author(s) | Marwa B., Krueger J., Stephenson E.A., Davidson S., Allan D., Knoppers B.M., Zawati M.H., Sullivan P., Shlien A., Malkin D., Fernandez C.V., Villani A. |
| Title | Ethical and Analytic Challenges With Genomic Sequencing of Relapsed Hematologic Malignancies Following Allogeneic Hematopoietic Stem-Cell Transplantation |
| Reference | (2021) 5 JCO Precision Oncology, 1339-1347. |
| Author(s) | Joly Y., Huerne K., Arych M., Bombard Y., De Paor A., Dove E.S., Granados Moreno P., Ho C.W.L., Ho C.H., Hoyweghen I.V., Kim H., Lebret A., Minssen T., Cathaoir K.O., Prince A.E.R., Nair A.P.S., Otlowski M., Pepper M.S., Sladek R., Song L., Voigt T.H., Zawati M.H., Dalpé G. |
| Title | The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination |
| Reference | 37:11 (2021) Trends in Genetics, 951-954. |
| https://www.cell.com/trends/genetics/fulltext/S0168-9525(21)00228-6 |
| Author(s) | Hagan J., Saulnier K., Ngueng Feze I., Alarie S., Joly Y. |
| Title | Genomics, Salmonella and Stakeholders’ perspectives: Technology and Public Acceptance Workshop |
| Reference | (2021) Salmonella Syst-OMICS Project Report, 1-85. |
| https://www.genomicsandpolicy.org/Ressources/syst-omics-workshop-report-final.pdf |
| Author(s) | Faraji S., Patrinos D., Hagan J., Knoppers B.M. |
| Title | A centralized rare disease database and whole-genome sequencing as a standard of care: two essential implications for the future of health |
| Reference | (2021) 6:1 FACETS, 1831-1834. |
| https://doi.org/10.1139/facets-2021-0065 |
| Author(s) | Lang M., Lemieux S., Hébert J., Sauvageau G., Zawati M.H. |
| Title | Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review |
| Reference | (2021) 23(11) Journal of Medical Internet Research, 1-13. |
| Author(s) | Dursi L.J., Bozoky Z., De Borja R.J., et al., (including Joly Y.) |
| Title | CanDIG: Federated network across Canada for multi-omic and health data discovery and analysis |
| Reference | 1:2 (2021) Cell Genomics, 1-7. |
| https://www.sciencedirect.com/science/article/pii/S2666979X21000409 |
| Author(s) | Tiller J., Keogh L., McInerney-Leo A., Belcher A., Barlow-Stewart K., Boughtwood T., Gleeson P., Dowling G., Prince A., Bombard Y., Joly Y., Delatycki M.B., Winship I., Otlowski M., Lacaze P. |
| Title | A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium |
| Reference | (2021) Journal of Medical Genetics, 1-10. |
| https://jmg.bmj.com/content/early/2021/09/20/jmedgenet-2021-107989 |
| Author(s) | Golinghorst D., De Paor A., Joly Y., Macdonald A.S., Otlowski M., Peter R., Prince A. |
| Title | Anti-selection & Genetic Testing: An Interdisciplinary Perspective |
| Reference | (2021) Journal of Law, Medicine and Ethics, 1-25. |
| https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3863417 |
| Author(s) | Joly Y., Gallois H., Dalpé G., Knoppers B.M., Turp D. |
| Title | Erreur en droit relative et en fait: le Renvoi relative à la Loi sur la non-discrimination génétique |
| Reference | 26:1 (2021) Lex Electronica, 1-32. |
| https://www.lex-electronica.org/articles/volume-26/volume-26-numero-1/errer-en-droit-relatif-et-en-fait-le-renvoi-relatif-a-la-loi-sur-la-non-discrimination-genetique/ |
| Author(s) | Cléophat J.E., Dorval M., Haffaf Z.E., Chiquette J., Collins S., Malo B., Fradet V., Joly Y., Nabi H. |
| Title | Whether, when, how, and how much? General public’s and cancer patients’ views about the disclosure of genomic secondary findings |
| Reference | 14:167 (2021) BMC Medical Genomics, 1-13. |
| https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-021-01016-8 |
| Author(s) | Alarie S., Hagan J., Dalpé G., Faraji S., et al., (including Granados Moreno P., Knoppers B.M., Joly Y.) |
| Title | Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data |
| Reference | 11:8 (2021) Journal of Personalized Medicine, 1-15. |
| https://pubmed.ncbi.nlm.nih.gov/34442372/ |
| Author(s) | Dalpé G., Pinkesz M., Marrocco G., Joly Y. |
| Title | Les enjeux québécois de la discrimination génétique : L’expérience d’un forun en ligne |
| Reference | 15:1-2 (2021) Les Ateliers de l’Éthique/The Ethics Forum, 4-38. |
| https://www.erudit.org/en/journals/ateliers/2020-v15-n1-2-ateliers06061/1077527ar/ |
| Author(s) | Kim H., Ho C.W.L., Ho C.H., Athira P.S., Kato K., De Castro L., Kang H., Huxtable R., Zwart H., Ives J., Lee I., Joly Y., Kim S.Y. |
| Title | Genetic discrimination: introducing the Asian perspective to the debate |
| Reference | 6:24 (2021) NPJ Genomic Medicine, 1-8. |
| https://www.nature.com/articles/s41525-021-00218-4 |
| Author(s) | Brooks JD, Nabi HH, Andrulis IL, et al., (including Joly Y., Knoppers B.M.) |
| Title | Personalized Risk Assessment for Prevention and Early Detection of Breast Cancer: Integration and Implementation (PERSPECTIVE I&I) |
| Reference | 11:6 (2021) Journal of Personalized Medicine, 1-18. |
| https://www.mdpi.com/2075-4426/11/6/511 |
| Author(s) | Lapointe J., Dorval M., Chiquette J., Joly Y., et al. |
| Title | A Collaborative Model for a Flexible, Accessible and Efficient Oncogenetic Services for Hereditary Breast and Ovarian Cancer: Preliminary Results and Protocol of the C-MOnGene Study |
| Reference | 13:11 (2021) Cancer Epidemiology and Prevention, 1-15. |
| https://pubmed.ncbi.nlm.nih.gov/34072979/ |
| Author(s) | Tremblay K, Rousseau S, Zawati MH, et al., (including Joly Y.) |
| Title | The Biobanque québécoise de la COVID-19 (BQC19)—A case-control bioresource to prospectively study the clinical and molecular determinants of COVID-19 clinical trajectories |
| Reference | 16:5 (2021) Biopreservation & Biobanking, 1-18. |
| https://pubmed.ncbi.nlm.nih.gov/34010280/ |
| Author(s) | Faraji S., Joly Y., Liu H., Marrocco G. |
| Title | Le droit québécois face à la génomique: bon temps pour mettre le pendule à l’heure |
| Reference | 78:1 (2021) Revue Générale de Droit Médical, 93-120. |
| https://www.bnds.fr/revue/rgdm/rgdm-78/le-droit-quebecois-face-a-la-genomique-bon-temps-pour-remettre-les-pendules-a-l-heure-10569.html |
| Author(s) | So D., Crocker K., Sladek R., Joly Y. |
| Title | Science Fiction Authors’ Perspectives on Human Genetic Engineering in Fiction |
| Reference | (2021) BMJ Medical Humanities, 1-13. |
| https://pubmed.ncbi.nlm.nih.gov/33893225/ |
| Author(s) | Joly Y., Dalpé G., Gallois H., Knoppers B.M., Turp D. |
| Title | Erring in Law and in Fact: The Supreme Court of Canada’s Reference re Genetic Non-Discrimination Act |
| Reference | 99:1 (2021) Canadian Bar Review, 172-192. |
| https://cbr.cba.org/index.php/cbr/article/view/4662 |
| Author(s) | Dalpé G., Pinkesz M., Oliviero E., Tolymbek M., Joly Y. |
| Title | Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites |
| Reference | 30:6 (2021) Journal of Genetic Counselling, 1613-1628. |
| https://pubmed.ncbi.nlm.nih.gov/33871129/ |
| Author(s) | Polygenetic Risk Score Task Force of the International Common Disease Alliance (including Granados Moreno P., Knoppers B.M.) |
| Title | Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps |
| Reference | (2021) Nature Medicine, 1-9. |
| https://www.nature.com/articles/s41591-021-01549-6 |
| Author(s) | Lang M., Bernier A., Knoppers B.M. |
| Title | AI in Cardiovascular Imaging: “Unexplainable” Legal and Ethical Challenges? |
| Reference | (2021) Canadian Journal of Cardiology, 1-27. |
| https://www.onlinecjc.ca/article/S0828-282X(21)00810-2/fulltext |
| Author(s) | Vears D.F., Minion J.T., Roberts S.J., Cummings J., Machirori M., Blell M., Budin-Ljøsne I., Cowley L., Dyke S.O.M., Gaff C., Green R., Hall A., Johns A.L., Knoppers B.M., Mulrine S., Patch C., Winkler E., Murtagh M.J. |
| Title | Return of individual research results from genomic research: A systematic review of stakeholder perspectives |
| Reference | (2021) PLOS ONE, 16(11): 1-71. |
| https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0258646 |
| Author(s) | Luu J.M., Sergeant A.K., Anand S.S., Desai D., Schulze K., Knoppers B.M., Zawati M.H., Smith E.E., Moody A.R., Black S.E., Larose E., Marcotte F., Kleiderman E., Tardif J.C., Lee D.S., Friedrich M.G., on behalf of the CAHHM Study Investigators |
| Title | The impact of reporting magnetic resonance imaging incidental findings in the Canadian alliance for healthy hearts and minds cohort |
| Reference | (2021) BMC Medical Ethics, 22(145): 1-15. |
| https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-021-00706-3 |
| Author(s) | Bernier A., Knoppers B.M. |
| Title | Biomedical Data Identifiability in Canada and the European Union: From Risk Qualification to Risk Quantification? |
| Reference | 18:1 (2021) SCRIPTed: A Journal of Law, Technology and Society, 4-56. |
| https://script-ed.org/article/biomedical-data-identifiability-in-canada-and-the-european-union-from-risk-qualification-to-risk-quantification/ |
| Author(s) | Lévesque E., Knoppers B.M. |
| Title | La télésanté au Québec : quel est l’encadrement prévu pour la consultation video? |
| Reference | 49 (2021) Revue de droit, Université de Sherbrooke, 77-129. |
| https://www.erudit.org/en/journals/rdus/2019-v49-n1-rdus06330/1081061ar/ |
| Author(s) | Pashayan N., Antoniou A.C., Lee A., Wolfson M., Chiquette J., Eloy L., Eisen A., Stockley T.L., Nabi H., Brooks J.D., Dorval M., Easton D.F., Knoppers B.M., Chiarelli A.M., Simard J. |
| Title | Should Age-Dependent Absolute Risk Thresholds Be Used for Risk Stratification in Risk-Stratified Breast Cancer Screening? |
| Reference | 11:9 (2021) Journal of Personalized Medicine, 1-9. |
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8469877/ |
| Author(s) | Lévesque E., Knoppers B.M. |
| Title | Faire jouer un rôle largi aux infirmières dans une approche individualisée de dépistage du cancer du sein: Analyse des options juridiques |
| Reference | 14:2 (2021) McGill Journal of Law and Health, 177-220. |
| https://mjlh.mcgill.ca/publications/volume-14-issue-2-142-2021/faire-jouer-un-role-largi-aux-infirmieres-dans-une-approche-individualisee-de-depistage-du-cancer-du-sein-analyse-des-options-juridiques/ |
| Author(s) | Knoppers B.M., Bernier A., Granados Moreno P., Pashayan N. |
| Title | Of Screening, Stratification, and Scores. Special Issue on Personalized Approaches for the Prevention and Treatment of Breast Cancer |
| Reference | (2021) Journal of Personalized Medicine, 11(8): 1-15. |
| https://www.mdpi.com/2075-4426/11/8/736 |
| Author(s) | Bienge C.M., Pashayan N., Brooks J.D., et al. (including Hagan J., Dalpé G., Granados Moreno P., Joly Y., Knoppers B.M.) |
| Title | Women’s Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada. Special Issue on Personalized Approaches for the Prevention and Treatment of Breast Cancer |
| Reference | 11:2 (2021) Journal of Personalized Medicine, 1-20. |
| https://pubmed.ncbi.nlm.nih.gov/33540785/ |
| Author(s) | Master Z., Lovell-Badge R., Knoppers B.M. |
| Title | ISSCR guidelines uphold human right to science for benefit of all |
| Reference | (2021) Nature, 595: 494. |
| https://pubmed.ncbi.nlm.nih.gov/34285410/ |
| Author(s) | Lewis A.C.F., Knoppers B.M., Green R.C. |
| Title | An international policy on returning genomic research results |
| Reference | (2021) Genome Medicine, 13(115): 1-3. |
| https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-021-00928-5 |
| Author(s) | Bernier A., Knoppers B.M. |
| Title | Longitudinal Health Studies: Secondary Uses Serving the Future. Biopreserv Biobank |
| Reference | (2021) Biopreserv Biobank, 19(5): 404-413. |
| https://www.liebertpub.com/doi/full/10.1089/bio.2020.0171 |
| Author(s) | Rahimzadeh V. Bartlett G., Knoppers B.M. |
| Title | A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada |
| Reference | (2021) BMC Medical Ethics, 22(71): 1-15. |
| https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-021-00635-1 |
| Author(s) | Shemie G., Nguyen M.T., Wallenburg J., Ratjen F., Knoppers B.M. |
| Title | The Equitable Implementation of Cystic Fibrosis Personalized Medicines in Canada |
| Reference | (2021) Journal of Personalized Medicine,11(5): 1-12. |
| https://pubmed.ncbi.nlm.nih.gov/34067090/ |
| Author(s) | Bovenberg J., Peloquin D., Bierer B., Barnes M., Knoppers B.M. |
| Title | Raising standards for global data-sharing—Response |
| Reference | (2021) SCIENCE, 371(6525): 134-135. |
| https://www.science.org/doi/10.1126/science.abf5425 |
| Author(s) | O’Doherty K.C., Shabani M., Dove E.S., et al. (including Knoppers B.M.) |
| Title | Toward better governance of human genomic data |
| Reference | (2021) Nature Genetics, 53(1): 2-8. |
| https://pubmed.ncbi.nlm.nih.gov/33414545/ |
| Author(s) | Al-Hussaini M., Mansour A.H., Arawi T.A., Zawati M.H., Morreim H. |
| Title | Editorial: Bioethics Amidst the COVID-19 Pandemic |
| Reference | 8 (2021) Frontiers in Medicine, 1-3. |
| https://doi.org/10.3389/fmed.2021.778146 |
| Author(s) | Hallinan, D., Bernier, A., Cambon-Thomsen A., Crawley F., et al. |
| Title | International Transfers of Personal Data for Health Research Following Schrems II: A Problem in Need of a Solution |
| Reference | Eur J Hum Genet 29, 1502–1509 (2021) |
| https://www.nature.com/articles/s41431-021-00893-y |
| Author(s) | Bernier A., Liu H., Knoppers B.M |
| Title | Computational Tools for Genomic Data De-Identification: Facilitating Data Protection Law Compliance |
| Reference | Nat Commun 12, 6949 (2021). |
| https://www.nature.com/articles/s41467-021-27219-2#citeas |
| Author(s) | Austin C., Bernier A., Bezuidenhout L., Bicarregui J., Biro T., Cambon-Thomsen A., Carroll S., Cournia Z., et al. |
| Title | Fostering Global Data Sharing: Highlighting the Recommendations of the Research Data Alliance COVID-19 Working Group |
| Reference | Wellcome Open Res 2021, 5:267 |
| https://wellcomeopenresearch.org/articles/5-267 |
| Author(s) | Devriendt T., Ammann C., Asselberghs F.W., Bernier A., Costas R., Friedrich M.G., et al. |
| Title | An Agenda-Setting Paper on Data Sharing Platforms?: euCanSHare Workshop |
| Reference | Open Research Europe 2021, 1:80 |
| https://open-research-europe.ec.europa.eu/articles/1-80 |
| Author(s) | Knoppers T., Beauchamp E., Dewar K., Kimmins S., Bourque G., Joly Y., Dupras C. |
| Title | The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies |
| Reference | 40:4 (2021) New Genetics & Society, 541-569. |
| https://www.tandfonline.com/doi/full/10.1080/14636778.2021.1997576 |
2020 Open
2020 Close
| Author(s) | Knoppers B.M. |
| Title | Foreward |
| Reference | In : Boggio A, Romano C.P.R., Almqvist J, eds. Human Germline Genome Modification and the Right to Science. Cambridge University Press; 2020 : xxvii-xxix. |
| Author(s) | Granados Moreno P., Joly Y., Roskams-Edris D. |
| Title | Could Open be the Yellow Brick Road to Innovation in Genomics in North America? |
| Reference | (2020) 13:1 McGill JL & Health 117 |
| https://mjlh.mcgill.ca/issues/volume-13-issue-1-131-2019/could-open-be-the-yellow-brick-road-to-innovation-in-genomics-in-north-america/ |
| Author(s) | Phillips M., Molnár-Gábor F., Korbel J.O., Thorogood A., Joly Y., Chalmers D., Townend D., Knoppers B.M. |
| Title | Genomics: data sharing needs international code of conduct |
| Reference | Nature. 2020; 578(7793): 31-33 |
| Author(s) | Dupras C., Beauchamp E., Joly Y. |
| Title | Selling direct-to-consumer epigenetic tests: are we ready? |
| Reference | (2020) 22 Nat. Rev. Gen., 1 |
| https://www.nature.com/articles/s41576-020-0215-2 |
| Author(s) | Dupras C., Joly Y., Rial-Sebbag E. |
| Title | Human rights in the postgenomic era: challenges and opportunities arising with epigenetics |
| Reference | (2020) Soc. Sci. Inf. |
| https://journals.sagepub.com/doi/full/10.1177/0539018419900139# |
| Author(s) | Smith E., Dupras C. |
| Title | Fair subject selection procedures must consider scientific uncertainty and variability in risk and benefit perception |
| Reference | (2020) 20:2 Am. J. Bioeth., 33 |
| https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1701744 |
| Author(s) | Joly Y., Dupras C., Pinkesz M., Tovino S.A., Rothstein M.A. |
| Title | Looking beyond GINA: policy approaches to address genetic discrimination |
| Reference | (2020) 21 Ann. Rev. Gen. Hum. Gen., 2.1 |
| https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-111119-011436 |
| Author(s) | Unim B., De Vito C., Hagan J., Villari P., Knoppers B.M., Zawati M.H. |
| Title | The Provision of Genetic Testing and Related Services in Quebec, Canada |
| Reference | (2020) 11 Frontiers in Genetics 127. |
| Author(s) | Lang M., Zawati M.H., Knoppers B.M. |
| Title | International mHealth Research: Old Tools and New Challenges |
| Reference | (2020) 48:1 Journal of Law, Medicine, & Ethics 178-186. |
| Author(s) | Thorogood A., Zawati M.H., Knoppers B.M. |
| Title | Oversight, governance, and policy for making decisions about return of individual genomic findings |
| Reference | (2020) Secondary Finding in Genomic Research: Translational and Applied Genomics 29-41 |
| Author(s) | Pinkesz M., Marrocco G., Joly Y., Zawati M.H. |
| Title | Re-examining the Canadian law of informed consent to medical treatment in the age of informatics |
| Reference | (2020) Informed Consent and Health: A Comparative Analysis 32-73 |
| Author(s) | Patrinos D., Caron R., Knoppers B.M., GenCOUNSEL Study, Zawati M.H. |
| Title | Genetic Counsellors, Legal Recognition and the Road Less Travelled |
| Reference | (2020) 14:1 McGill Journal of Law and Health 109-144. |
| https://mjlh.mcgill.ca/genetic-counsellors-legal-recognition-and-the-road-less-travelled/ |
| Author(s) | Barnes R., Votova K., Rahimzadeh V., Osman N., Penn A.M., Zawati M.H., Knoppers B.M. |
| Title | Biobanking for Genomic and Personalized Health Research: Participant Perceptions and Preferences |
| Reference | (2020) 18:3 Biopreservationa and Biobanking 204-212. |
| Author(s) | Campbell P.J., Getz, Korbel J.O., et al. (including Knoppers B.M. & Joly Y.), The ICGC/TCGA Pan-Cancer Analysis of Whole Genomes Consortium |
| Title | Pan-cancer analysis of whole genomes |
| Reference | Nature. 2020; 578(1): 82-93. |
| Author(s) | Narayanasamy S., Markina V., Thorogood A., Blazkova A., Shabani M., Knoppers B.M., Prainsack B., Koesters R. |
| Title | Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe |
| Reference | Frontiers in Genetics. 2020; 11(303): 1-15. |
| Author(s) | Wallace S.E., Kirby E., Knoppers B.M. |
| Title | How Can We Not Waste Legacy Genomic Research Data? |
| Reference | Frontiers in Genetics. 2020; 11(446): 1-6. |
| Author(s) | Kleiderman E., Nguyen M.T., Knoppers B.M. |
| Title | Of the Rights and Best Interests of Future Generations |
| Reference | The American Journal of Bioethics. 2020; 20(8): 38-40. |
| Author(s) | Bernier A., Knoppers B.M. |
| Title | Pandemics, privacy, and public health research |
| Reference | Canadian Journal of Public Health. 2020; https://doi.org/10.17269/s41997-020-00368-5. |
| Author(s) | Knoppers B.M., Kekesi-Lafrance K. |
| Title | The Genetic Family as Patient? |
| Reference | The American Journal of Bioethics. 2020; 20(6): 77-80. |
| Author(s) | Knoppers B.M., Beauvais M.J.S., Joly Y., Zawati M.H., Rousseau S., Chassé M., Mooser V. |
| Title | Modelling Consent in the Time of COVID-19 |
| Reference | (2020) 7:1 Journal of Law and the Biosciences 1-6. |
| Author(s) | Auffray C., Balling R., Blomberg N., Bonaldo M.C., Boutron B., Brahmachari S., Bréchot C., Cesario A., Chen S.J., Clément K., Danilenko D., Di Meglio A., Gelemanovi? A., Goble C., et al. (including Knoppers B.M.) |
| Title | COVID-19 and beyond: a call for action and audacious solidarity to all the citizens and nations, it is humanity’s fight |
| Reference | F1000 Research. 2020; 1-14. |
| Author(s) | Yotova R., Knoppers B.M. |
| Title | The Right to Benefit from Science: What Implications for Big Health Data? |
| Reference | European Journal of International Law. 2020. (In press). |
| Author(s) | Knoppers B.M., Chadwick R., Beauvais M. |
| Title | Biomedical Research Policy: Back to the Future? |
| Reference | In: Dove ES, Shuibhne NN, eds. Law and Legacy in Medical Jurisprudence: Essays in Honour of Graeme Laurie. Cambridge University Press. (In press). |
| Author(s) | Martinent E., Zawati M.H. |
| Title | Le virage numérique comme vecteur d’égalité (territoriale) en santé (I) / The digital shift as a vector of (territorial) equality in health (I) |
| Reference | (2020) 15 Ethics, Medicine and Public Health. |
| Author(s) | Zawati M.H., Lang M. |
| Title | What’s in the Box?: Uncertain Accountability of Machine Learning Applications in Healthcare |
| Reference | (2020) 20:11 The American Journal of Bioethics 37-40. |
| Author(s) | Dupras C., Hagan J., Joly Y. |
| Title | Overcoming Biases Together: Normative Stakes of Interdisciplinarity in Bioethics |
| Reference | AJOB Empirical Bioethics, 11:1, 20-23. |
| https://doi.org/10.1080/23294515.2019.1706209 |
| Author(s) | Bernier A. |
| Title | Rare Disease Data Stewardship in Canada |
| Reference | (2020) 5:1 FACETS, 836-863. |
| https://doi.org/10.1139/facets-2020-0050 |
| Author(s) | Bernier A., Knoppers B. M. |
| Title | Health Data Sharing in Canada |
| Reference | (2020) 41:2 Health Law in Canada, 30-63 |
| Author(s) | Bernier A., Thorogood A. |
| Title | Sharing Bioinformatic Data for Machine Learning: Maximizing Interoperability through License Selection |
| Reference | (2020) Proceedings of BIOSTEC 2020: 13th International Joint Conference on Biomedical Engineering Systems and Technologies, Bioinformatics 2020: International Conference on Bioinformatics Models, Methods and Algorithms. Doi: 10.5220/0009179502260232. |
| Author(s) | Joly Y., Dalpé G., Dupras C., Bévière-Boyer B., de Paor A., Dove S.E., Granados Moreno P., Ho C.W.L., Ho C.H., Ò Cathaoir K., Kato K., Kim H., Song L., Minssen T., Nicolás P., Otlowski M., Prince A.E.R., Nair A.P.S., Van Hoyweghen I., Voigt T.H., Yamasaki C., Bombard Y. |
| Title | Establishing the International Genetic Discrimination Observatory |
| Reference | (2020) 52:5 Nat Genet, 466–468
|
| http://www.nature.com/articles/s41588-020-0606-5 |
| Author(s) | Becker R., Thorogood A., Ordish J., Beauvais M.J.S. |
| Title | COVID-19 Research: Navigating the European General Data Protection Regulation |
| Reference | (2020) 22:8 Journal of Medical Internet Research e19799 https://doi.org/10.2196/19799 |
| Author(s) | Beauvais M., Knoppers B.M. |
| Title | COVID-19: Who's Afraid of Data Sharing |
| Reference | (2020) 1:1 Canadian Science Policy Centre Featured Editorial Series 39 |
| Author(s) | Molnar-Gabor F., Beauvais M. |
| Title | Transferring genomic and health-related data following Schrems II |
| Reference | 2020 Global Alliance for Genomics & Health GDPR Forum |
| https://www.ga4gh.org/news/ga4gh-gdpr-brief-transferring-genomic-and-health-related-data-following-schrems-ii/ |
| Author(s) | Beauvais M. |
| Title | Privacy and Confidentiality in Human Stem Cell Research - Finding the Right Balance |
| Reference | 2020 McGill Regenerative Medicine Insights |
| https://mrm.research.mcgill.ca/2020/10/mrm-insights-privacy-and-confidentiality-in-human-stem-cell-research-finding-the-right-balance/ |
| Author(s) | Beauvais M., Ordish J. |
| Title | Standard Contractual Clauses: Opinion of the Advocate General in Schrems II |
| Reference | 2020 Global Alliance for Genomics & Health GDPR Forum |
| https://www.ga4gh.org/news/ga4gh-gdpr-brief-standard-contractual-clauses-opinion-of-the-advocate-general-in-schrems-ii/ |
2019 Open
2019 Close
| Author(s) | Thorogood A., Dalpé G., Knoppers B. |
| Title | Return of individual genomic research results: are laws and policies keeping step? |
| Reference | (2019) European Journal of Human Genetics 1 |
| https://www.nature.com/articles/s41431-018-0311-3 |
| Author(s) | Thorogood A., Mäki-Petäjä-Leinonen A., Dalpé G., Gastmans C., Gauthier S. |
| Title | Openness, inclusion, and respect in dementia research |
| Reference | (2019) 18:2 The Lancet Neurology 135 |
| https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30445-9/abstract |
| Author(s) | Knoppers B.M. & Kleiderman E. |
| Title | "CRISPR babies": What does this mean for science and Canada? |
| Reference | (2019) 191:4 Canadian Medical Association Journal, E91-E92 |
| Author(s) | Ravitsky V., Nguyen M.T., Birko S., Kleiderman E. et al. (including Knoppers B.M.) |
| Title | Pre-implantation genetic diagnosis (PGD): The road forward in Canada |
| Reference | (2019) 41:1 Journal of Obstetrics and Gynaecology Canada, 68-71 |
| Author(s) | Dalpé G., Thorogood A., Knoppers B.M. |
| Title | A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research |
| Reference | (2019) 10 Front Genet, 1-12
|
| https://www.frontiersin.org/articles/10.3389/fgene.2019.00289/abstract |
| Author(s) | Knoppers B.M., Thorogood A., Zawati M.H. |
| Title | Letter: Relearning the 3 R’s? Reinterpretation, recontact, and return of genetic variants |
| Reference | (2019) Genetics in Medicine, doi:10.1038/s41436-019-0494-1. |
| Author(s) | Zawati M.H., Knoppers B.M. |
| Title | Reciprocity and the Quest for Meaningful Disclosure |
| Reference | The American Journal of Bioethics. 2019; 15(5): 36-38. |
| Author(s) | Boggio A., Knoppers B.M., Almqvist J., Romano C.P.R. |
| Title | The Human Right to Science and the Regulation of Human Germline Engineering |
| Reference | The CRISPR Journal. 2019; 2(3). |
| Author(s) | Knoppers B.M. |
| Title | Need is great for evidence-based policies on stem cell research |
| Reference | iPolitics. 2019. |
| Author(s) | Lévesque E., Hagan J., Knoppers B.M., Simard J. |
| Title | Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening |
| Reference | New Genetics and Society. 2019; 38:1. |
| Author(s) | Fortier I., Dragieva N., Saliba M., et al. (including Knoppers B.M.) |
| Title | Harmonization of the Health and Risk Factor Questionnaire data of the Canadian Partnership for Tomorrow Project: a descriptive analysis |
| Reference | Canadian Association Medical Journal. 2019; 7(2): E272-E282. |
| Author(s) | Joly Y., Marrocco G., Dupras C. |
| Title | Risks of compulsory genetic databases |
| Reference | (2019) 363:6430 Science 938-940. |
| Author(s) | Hetu M., Koutouki K., Joly Y. |
| Title | Genomics for All: International Open Science Genomics Projects and Capacity Building in the Developing World |
| Reference | (2019) 10:95 Frontiers in Genetics 1-9. |
| Author(s) | Phillips M., Knoppers B.M. |
| Title | Whose Commons? Data Protection as a Legal Limit of Open Science |
| Reference | Journal of Law, Medicine & Ethics. 2019; 47: 106-111. |
| Author(s) | McGuire A.L., Majumder M.A., Villanueva A.G., Bardill J., et al. (including Knoppers B.M. and Thorogood A.) |
| Title | Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons |
| Reference | The Journal of Law, Medicine and Ethics. 2019; 47(1): 12-20. |
| Author(s) | Zawati M |
| Title | Will an App a Day Keep the Doctor Away? |
| Reference | (Summer 2019) Brainstorm 1, 28-29. |
| Author(s) | Bouthillier D, Zawati MH, Joly Y. |
| Title | Personalised medicine–introduction to the technology |
| Reference | (2019) Lexis Nexis, LexisPSL practice note. |
| Author(s) | Kleiderman E. & Ogbogu U. |
| Title | Realigning gene editing with clinical research ethics: What the “CRISPR twins” debacle means for Chinese and international research ethics governance |
| Reference | (2019) 26:4 Accountability in Research, 257-264 |
| Author(s) | Bubela T., Kleiderman E., Master Z., Ogbogu U. et al. (including Knoppers B.M.) |
| Title | Canada’s Assisted Human Reproduction Act: Pragmatic reforms in support of research |
| Reference | (2019) 6 Frontiers in Medicine, 157 |
| Author(s) | Kleiderman E., Ravitsky V., Knoppers B.M. |
| Title | The ‘serious’ factor in germline modification |
| Reference | (2019) Journal of Medical Ethics, doi: 10.1136/medethics-2019-105436. |
| Author(s) | Kleiderman E. & Stedman I. |
| Title | Human germline genome editing is illegal in Canada, but could it be desirable for some members of the rare disease community? |
| Reference | (2019) Journal of Community Genetics, doi: 0.1007/s12687-019-00430-x |
| Author(s) | Rothstein M.A., Zawati M.H., Knoppers B.M. |
| Title | Regulatory Landscape of International Direct-to-Participant (DTP) Genomic Research: Time to Untie the Gordian Knot? |
| Reference | (2019) 47(2) The Journal of Law, Medicine & Ethics, 336-341. |
| https://journals.sagepub.com/doi/pdf/10.1177/1073110519857291 |
| Author(s) | Beauvais M., Knoppers B.M. |
| Title | When information is the treatment? Precision medicine in healthcare |
| Reference | September 2019. doi:10.1177/0840470419859017 |
| Author(s) | Milne R., Morley K.I., Howard H., Niemiec E. et al. (including Thorogood A. & Kleiderman E.) |
| Title | Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia |
| Reference | (2019) Human Genetics, doi: 10.1007/s00439-019-02062-0. |
| Author(s) | Knoppers B.M. & Kleiderman E. |
| Title | Heritable genome editing: Who speaks for “future” children? |
| Reference | (2019) 2:5 The CRISPR Journal, 285-292 |
| Author(s) | Kleiderman E., Thompson R., Boily A., Borry P. et al. (including Knoppers B.M.) |
| Title | Doping controls and the "mature minor" elite athlete: Towards clarification? |
| Reference | (2019) International Journal of Sport Policy and Politics, doi: 10.1080/19406940.2019.1680416 |
| Author(s) | Zawati M.H., Lang M. |
| Title | Mind the App: Considerations for the Future of Mobile Health in Canada |
| Reference | (2019) 7(11) JMIR Mhealth Uhealth, e15301, 1-3. |
| Author(s) | Thorogood A., Bernier A., Zawati M.H., Knoppers B.M. |
| Title | A Legal Duty of Genetic Recontact in Canada |
| Reference | Health Law in Canada. 2019; 40(2): 58-80. |
| Author(s) | Saulnier K.M., Bujold D., Dyke S.O.M., Dupras C., Beck S., Bourque G., Joly Y. |
| Title | Benefits and barriers in the design of harmonized access agreements for international data sharing |
| Reference | (2019) 6:297 Scientific Data, https://doi.org/10.1038/s41597-019-0310-4. |
| https://www.nature.com/articles/s41597-019-0310-4 |
| Author(s) | Rothstein M., Zawati M.H., Beskow L.M., Brelsford K., Brothers K., Hammack C., Hazel J., Joly Y., Lang M., Patrinos D., Saltzman A., Knoppers B.M. |
| Title | Legal and Ethical Challenges of International Direct-to-Participant Genomic Research: Conclusions and Recommendations |
| Reference | (2019) 47:4 Journal of Law, Medicine and Ethics, 705-731 |
| Author(s) | Issa A.M., Thorogood A., Joly Y., Knoppers B.M. |
| Title | Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations |
| Reference | (2019) 21:3 Genetics in Medicine, 542-544 |
| Author(s) | Cléophat J.E., Marin A., Pelletier S., Joly Y., Gagnon P., Déry A., Chiquette J., Gagnon B., Roy L., Bitzas V., Nabi H., Dorval M. |
| Title | What do cancer patients' relatives think about addressing cancer family history and performing genetic testing in palliative care? |
| Reference | (2019) European Journal of Human Genetics, doi:10.1038/s41431-019-0505-3 |
| Author(s) | Ngueng Feze I., Marrocco G., Pinkesz M., Lacey J., Joly Y. |
| Title | Flying under the radar: Two decades of DNA testing at IRCC |
| Reference | (2019) 17 Journal of Law and Technology 226-275 |
| Author(s) | Joly Y., Dalpé G., Pinkesz M. |
| Title | Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non-Discrimination Act (GNDA) |
| Reference | (2019) 2:2 Canadian Journal of Bioethics, 94-96 |
| https://cjb-rcb.ca/index.php/cjb-rcb/article/view/192 |
| Author(s) | Dupras C., Beck S., Rothstein M.A., Berner A., Saulnier K.M., Pinkesz M., Prince A.E.R., Liosi S., Song L., Joly Y. |
| Title | Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance |
| Reference | 5:3 (2019) Environmental Epigenetics, 1-12 |
| Author(s) | Hetu M., Koutouki K., Joly Y. |
| Title | Genomics for All: International Open Science Genomics Projects and Capacity Building in the Developing World |
| Reference | 10:95 (2019) Frontiers in Genetics, 1-9 |
| Author(s) | Capps B., Chadwick , Joly Y., et al. |
| Title | Statement on Bioinformatics and Capturing the Benefits of Genome Sequencing for Society |
| Reference | 13:24 (2019) Human Genomics, 1-6 |
| Author(s) | Cleophat J.E., Pelletier S., Joly Y., et al. |
| Title | Addressing cancer family history at the end of life: How frequent, relevant, and feasible is it? A survey of palliative care providers |
| Reference | (2019) Palliative Medicine, 1-3 |
| Author(s) | Granados Moreno P., […] Joly Y. |
| Title | Open Science Precision Medicine in Canada: Points to Consider |
| Reference | (2019) 4 FACETS 1-19 |
| Author(s) | Capps B., Mulvihill J.J., Joly Y., Lysaght T., & The Human Genome Organisation (HUGO) Committee on Ethics, Law, and Society (CELS) |
| Title | The View of CRISPR Patents Through the Lens of Solidarity and the Public Good |
| Reference | 18:12 (2018) The American Journal of Bioethics, 54-56 |
| Author(s) | Dupras C., Saulnier K.M., Joly Y. |
| Title | Epigenetics, ethics, law and society: A multidisciplinary review of descriptive, instrumental, dialectical and reflexive analyses |
| Reference | 49:5 (2019) Social Studies of Science, 785-810 |
| Author(s) | Baker D.B., Knoppers B.M., Phillips M., van Enckevort D., Kaufmann P., Lochmuller H., Taruscio D. |
| Title | Privacy-Preserving Linkage of Genomic and Clinical Data Sets |
| Reference | IEEE/ACM Transactions on Computational Biology and Bioinformatics. 2019; 16(4): 1342-1348 |
| Author(s) | Nguyen M.T., Goldblatt J., Isasi R., Jagut M., Hechtelt Jonker A., Kaufmann P., Ouillade L., Molnar-Gabor F., Shabani M., Sid E., Tassé A.M., Wong-Rieger D., Knoppers B.M., on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force |
| Title | Model consent clauses for rare disease research |
| Reference | BMC Medical Ethics. 2019; 20(55): 1-7 |
| Author(s) | Boccia S, Pastorino R, Ricciardi W, Ádány R, Barnhoorn F, Boffetta P, Cornel MC, De Vito C, Gray M, Jani A, Lang M, Roldan J, Rosso A, Sánchez JM, Van Dujin CM, Van El CG, Villari P, Zawati MH |
| Title | How to Integrate Personalized Medicine into Prevention? Recommendations from the Personalized Prevention of Chronic Diseases (PRECeDI) Consortium. |
| Reference | (2019) 5 Public Health Genomics, 1-7 |
| https://www.ncbi.nlm.nih.gov/pubmed/31805565 |
| Author(s) | Knoppers B.M., Greely H.T. |
| Title | Biotechnologies nibbling at the legal “human." |
| Reference | Science. 2019; 366(6472): 1455-1457 |
| Author(s) | Song L., Joly Y. |
| Title | The first gene-edited baby in the world: Will Chinese review its regulatory framework for gene-editing technology |
| Reference | (2019) Juriste International, p.47. |
| Author(s) | Middleton A., Milne R., Howard H., Niemec E. et al. (including Kleiderman E. and Thorogood A.) |
| Title | Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate their genomic data |
| Reference | (2019) European Journal of Human Genetics, doi: 10.1038/s41431-019-0550-y |
| Author(s) | Kleiderman E., Ravitsky V. & Knoppers B.M. |
| Title | ‘Serious’ factor—a relevant starting point for further debate: A response |
| Reference | (2019) Journal of Medical Ethics, doi: 10.1136/medethics-2019-105832 |
| Author(s) | Kleiderman E. |
| Title | The regulation of human germline genome modification in Canada |
| Reference | (2019) In A. Boggio, J. Almqvist & C. P. R. Romano (Eds.), Human germline genome modification and the right to science: A comparative study of national laws and policies. Cambridge: Cambridge University Press |
| Author(s) | Dyke S.O.M., Saulnier K.M., Dupras C., Procaccini D., Webster A., Maschke K., Rothstein M.A., Siebert J., Walter J., Beck S., Pastinen T., Joly Y. |
| Title | Points-to-consider on the return of results in epigenetics research |
| Reference | (2019) 11:1 Gen. Med., 31-40 |
| Author(s) | Rothstein M.A., Zawati M.H., et al. (including Knoppers B.M. and Joly Y.) |
| Title | Legal and Ethical Challenges of International Direct-to-Participant Genomic Research: Conclusions and Recommendations |
| Reference | (2019) 47(4), J Law Med Ethics, 705-731, doi: 10.1177/1073110519898297. |
| Author(s) | Zawati M.H., Chalmers D., et al. |
| Title | Country Reports |
| Reference | (2019) 47(4) J Law Med Ethics, 582-704, doi: 10.1177/1073110519897736. |
| Author(s) | Zawati M.H. |
| Title | Introduction to the Country Reports |
| Reference | (2019) 47(4) J Law Med Ethics, 581, doi: 10.1177/1073110519897735. |
| Author(s) | Bernier A., Bovenberg J. |
| Title | The Data Protection Impact Assessment and Genomic Health Research |
| Reference | Global Alliance for Genomics and Health GDPR Brief (September 2019). |
| Author(s) | Beauvais M., Kirby E., Knoppers B.M. |
| Title | Building the Human Cell Atlas: Issues with Tissues |
| Reference | (2019) Human Cell Atlas Report |
| https://www.genomicsandpolicy.org/Ressources/Issues-with-Tissues_2019.pdf |
2018 Open
2018 Close
| Author(s) | Esquivel-Sada D, Nguyen MT |
| Title | Diagnosis of rare diseases under focus: impacts for Canadian patients |
| Reference | (2018) 9:1 J Community Genetics, 37-50. |
| Author(s) | Thorogood A., Knoppers B.M. |
| Title | Human Cell Atlas White Paper: Ethics, Legal, and Regulatory Principles |
| Reference | (Oct 2017). |
| Author(s) | Lang M., Zawati M.H. |
| Title | The App Will See You Now: Mobile Health, Diagnosis, and the Practice of Medicine in Quebec and Ontario |
| Reference | (2018) Journal of Law and the Biosciences, 1-32. |
| Author(s) | Kleiderman E., Pack A., Borry P., Zawati M.H. |
| Title | The author who wasn’t there? Fairness and attribution in publications following access to population biobanks |
| Reference | (2018) 13:3 PLoS ONE, e0194997 |
| Author(s) | Widschwendter M., Jones A., Evans I., et al. (including Tassé A.M., Knoppers B.M., Joly Y.) |
| Title | Epigenome-based cancer risk prediction: rationale, opportunities and challenges |
| Reference | Nature Reviews Clinical Oncology. 2018. |
| Author(s) | Vears D., Sénécal K., Clarke A., Jackson L., Laberge A.M., Lovrecic L., Piton A., von Gassen K., Yntema H., Knoppers B.M., Borry P. |
| Title | Points to consider for laboratories reporting results from diagnostic genomic sequencing |
| Reference | European Journal of Human Genetics. 2018; 26: 36-43. |
| Author(s) | Contreras J., Knoppers B.M. |
| Title | The Genomic Commons. Annual Review of Genomics and Human Genetics |
| Reference | 2018; 19: 1.1-1.25. |
| Author(s) | Ogbogu U., Zarzeczny A., Baltz J., Bedford P., et al. (including Kleiderman E., Nguyen M.T., Noohi F. and Knoppers B.M.) |
| Title | Research on human embryos and reproductive materials: Revisiting Canadian law and policy |
| Reference | (2018) 13:3 Healthcare Policy, 10-19 |
| Author(s) | Kirby E., Tassé A.M., Zawati M., Knoppers B.M. |
| Title | Data Access and Sharing by Researchers in Genomics |
| Reference | (Montréal: Génome Québec, March 2018). |
| Author(s) | Kirby E., Tassé A.M., Ma’n H. Zawati M., Knoppers B.M. |
| Title | L’accès et le partage de l’information par les chercheurs en génomique |
| Reference | Document d’orientation politique (Montréal: Génome Québec, 2018). |
| Author(s) | Zawati M.H., Joly Y., Knoppers B.M. |
| Title | L’autonomie basée sur l’individualisme libéral : les limites dans le contexte des biobanques populationnelles |
| Reference | in Hervé C, eds., Mélanges, (2018), 279-293.
|
| Author(s) | Granados Moreno P., Noohi F., Joly Y. |
| Title | Ethics and Genetics |
| Reference | Reference Module in Biomedical Sciences |
| Author(s) | Zawati M.H., Tassé A.M., Mendy M., Caboux E., Lang M. |
| Title | Barriers and Opportunities in Consent and Access Procedures in Low- and Middle-Income Country Biobanks: Meeting Notes from the BCNet Training and General Assembly |
| Reference | (2018) Biopreservation and Biobanking, 10.1089/bio.2017.0081. |
| Author(s) | Birko S., Lemoine M.E., Nguyen M.T., Ravitsky V |
| Title | Moving Towards Routine Non-Invasive Prenatal Testing (NIPT): Challenges Related to Women's Autonomy |
| Reference | (2018) 2:2 OBM Genetics, doi: 10.21926/obm.genet.1802018 |
| http://www.lidsen.com/journals/genetics/genetics-02-02-018 |
| Author(s) | Kleiderman E., Boily A., Knoppers B.M. |
| Title | Genetically enhanced minors: Whose responsibility? |
| Reference | (2018) 18:6 The American Journal of Bioethics, 24-26 |
| Author(s) | Middleton A., Niemiec E., Prainsack B., Bobe J., et al. (including Kleiderman E. and Thorogood A.) |
| Title | 'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods |
| Reference | (2018) 15:4 Personalized Medicine, 311-318 |
| Author(s) | Thorogood A., Bobe J., Prainsack B., Middleton A., et al. (including Kleiderman E.) |
| Title | APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
| Reference | (2018) 12:7 Human Genomics |
| Author(s) | Knoppers B.M., Nguyen M.T., Noohi F., Kleiderman E. |
| Title | L’ingénierie ciblée du génome humain: considérations éthiques et politiques |
| Reference | Document d'orientation politique (Montréal: Génome Québec, 2018) |
| Author(s) | Dummer T.J.B., Awadalla P., et al. (including Knoppers B.M., Zawati M.) |
| Title | The Canadian Partnership for Tomorrow Project: a pan-Canadian platform for research on chronic disease prevention |
| Reference | (2018) 109:23 Canadian Medical Association Journal (CMAJ), E710-E717. |
| Author(s) | Ngueng Feze I., Dalpé G., Song L., Farber J., Goodridge L., Levesque R. C., Joly Y. |
| Title | For the safety of fresh produce: regulatory considerations for Canada on the use of whole genome sequencing to subtype Salmonella |
| Reference | Front. Sustain. Food Syst., 08 June 2018 |
| https://doi.org/10.3389/fsufs.2018.00021 |
| Author(s) | Dupras C., Song L., Saulnier K.M. and Joly Y. |
| Title | Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination |
| Reference | (2018) Front. Genet. 9:202. doi: 10.3389/fgene.2018.00202 |
| https://www.frontiersin.org/articles/10.3389/fgene.2018.00202/full |
| Author(s) | Saulnier K.M., Cina M., Chan B., Pelletier S., Dorval M., and Joly Y. |
| Title | Communication of Genetic Information in the Palliative Care Context: Ethical and Legal Issues |
| Reference | (2018) Medical Law International, https://doi.org/10.1177/0968533218762239 |
| http://journals.sagepub.com/doi/abs/10.1177/0968533218762239 |
| Author(s) | Touré S.B., Kleiderman E., Knoppers B.M. |
| Title | Bridging stem cell research and medicine: a learning health system |
| Reference | (2018) 13:6 Regenerative Medicine, 741-752 |
| Author(s) | Rahimzadeh V., Schickhardt C., Knoppers B.M., Sénécal K. et al. |
| Title | Key Implications of Data Sharing in Pediatric Genomics |
| Reference | (2018) 172: 5, JAMA Pediatrics, 476-481. |
| Author(s) | Sénécal K., Unim B., Knoppers B.M. |
| Title | Newborn Screening Programs: Next Generation Ethical and Social Issues |
| Reference | (2018) 2: 3, OBM Genetics, 1-15. |
| Author(s) | Kleiderman E., Boily A., Hasilo C., Knoppers B.M. |
| Title | Overcoming barriers to facilitate the regulation of multi-centre regenerative medicine clinical trials |
| Reference | (2018) 9:1 Stem Cell Research & Therapy, 307-315 |
| Author(s) | Germain L., Larouche D., Nedelec B., Perreault I., Duranceau L., Bortoluzzi P., Beaudoin C., Genest H., Caouette-Laberge L., Dumas A., Bussiere A., Boghossian E., Kanevsky J., Leclerc Y., Lee J., Nguyen M.T., Bernier V., Knoppers B.M., Moulin V.J., Auger F. |
| Title | Autologous Bilayered Self-Assembled Skin Substitutes (SASSs) as Permanent Grafts: A Case Series of 14 Severely Burned Patients Indicating Clinical Effectiveness |
| Reference | (2018) 36 European Cells and Materials, 123-136. |
| https://pdfs.semanticscholar.org/944d/e594429eb17f1b95e7cca45b67e06ba9ac1e.pdf?_ga=2.49227686.1648337741.1544713826-1215184509.1544713826 |
| Author(s) | Middleton A., Milne R., Thorogood A., Kleiderman E., et al. |
| Title | Attitudes of publics who are unwilling to donate DNA data for research |
| Reference | (2018) European Journal of Medical Genetics, doi: 10.1016/j.ejmg.2018.11.014 |
| Author(s) | John Patrick Woolley, Emily Kirby, (…) Anne Marie Tassé, et al., |
| Title | Responsible Sharing of Biomedical Data and Biospecimens via the ‘Automatable Discovery and Access Matrix’ (ADA-M) |
| Reference | (2018) 3:17 Genomic Medicine doi:10.1038/s41525-018-0057-4. |
| https://www.nature.com/articles/s41525-018-0057-4 |
| Author(s) | Moran N. Cabili, Knox Carey (…), Anne-Marie Tasse et al. |
| Title | Simplifying research access to genomics and health data with Library Cards |
| Reference | (2018) Nat Scientific Data 1-5. doi: 10.1038/sdata.2018.39 |
| https://www.nature.com/articles/sdata201839 |
| Author(s) | Baker D., Knoppers B.M., Phillips M. et al. |
| Title | Privacy-Preserving Linkage of Genomic and Clinical Data Sets |
| Reference | IEEE/ACM Transactions on Computational Biology and Bioinformatics (in press) |
| https://ieeexplore.ieee.org/document/8423499 |
| Author(s) | Phillips M. |
| Title | International data-sharing norms: from the OECD to the General Data Protection Regulation (GDPR) |
| Reference | (2018) 137:8 Human Genetics 575–582 |
| https://link.springer.com/article/10.1007/s00439-018-1919-7 |
| Author(s) | Knoppers B.M. |
| Title | Wider human-rights focus for health data |
| Reference | (2018) 558 Nature 189 |
| Author(s) | Phillips M. |
| Title | Can Genomic Data Be Anonymised? |
| Reference | October 2018 GA4GH-GDPR Data Sharing Forum Brief |
| https://www.ga4gh.org/news/can-genomic-data-be-anonymised/ |
| Author(s) | Cline, M. S., Liao, R. G., Parsons, M. T., Paten, B., Alquaddoomi, F., Antoniou, A., ... Thorogood A., Knoppers B.M. & Couch, F. J. |
| Title | BRCA Challenge: BRCA Exchange as a Global Resource for Variants in BRCA1 and BRCA2 |
| Reference | PLoS Genetics 14, no. 12 (2018): e1007752. |
| Author(s) | Thorogood, A., Touré, S. B., Ordish, J., Hall, A., & Knoppers, B.M. |
| Title | Genetic database software as medical devices |
| Reference | Human mutation, 39(11), 1702-1712. |
| Author(s) | Thorogood, A., Mäki-Petäjä-Leinonen, A., Brodaty, H., Dalpé, G., Gastmans, C., Gauthier, S., ... & Bobrow, M |
| Title | Consent recommendations for research and international data sharing involving persons with dementia. |
| Reference | Alzheimer's & Dementia, 14(10), 1334-1343. |
| Author(s) | Thorogood, A. |
| Title | Genomic data sharing in Canada: flying under the regulatory radar? |
| Reference | Human genetics, 1-7. |
| Author(s) | Thorogood A., Dalpé G., McLauchlan D. & Knoppers B.M. |
| Title | Canadian Consent and Capacity Regulation: Undermining Dementia Research and Human Rights? |
| Reference | (2018) 12:1 McGill Journal of Law & Health, 67-122
|
| https://mjlh.mcgill.ca/publications/volume-12-issue-1/canadian-consent-and-capacity-regulation-undermining-dementia-research-and-human-rights |
| Author(s) | Rothstein M.A., Harrell H.L., Saulnier K.M., Dove E.S., Fan C.T., Hung T.-H., Nnamuchi O, Obadia A., Siegal G., Knoppers B.M. |
| Title | Broad Consent for Future Research: International Perspectives |
| Reference | (2018) 40:6 IRB: Ethics & Human Research., 7-12. |
| Author(s) | Issa, A. M., Thorogood, A., Joly, Y., & Knoppers, B. M. |
| Title | Accelerating evidence gathering and approval of precision medicine therapies: the FDA takes aim at rare mutations. |
| Reference | Genetics in Medicine, 1. |
| https://www.nature.com/articles/s41436-018-0099-0 |
| Author(s) | Williams-Jones B., Dupras C., Couture V., Boulanger R. |
| Title | Launch of the Canadian Journal of Bioethics |
| Reference | (2018) 1:1 Canadian Journal of Bioethics, 1-3. |
| https://cjb-rcb.ca/index.php/cjb-rcb/article/view/47/6 |
| Author(s) | Dupras C. |
| Title | Rapprochement des pôles nature-culture par l’épigénétique : portrait d’un bouleversement épistémologique attendu |
| Reference | (2018) 12:2-3 Les Ateliers de l'éthique, 120-145. |
| http://dx.doi/10.7202/1051278ar |
| Author(s) | Dupras C., Birko S., Affdal A., Haidar H., Lemoine M.-E., Ravitsky V. |
| Title | Benefits, Challenges and Ethical Principles Associated with Implementing Non-invasive Prenatal Testing: A Delphi Study |
| Reference | (2018) 6:4 CMAJ Open, E513-E519. |
| http://dx.doi/10.9778/cmajo.20180083 |
| Author(s) | Fortin A., Dupras C. |
| Title | L’humour macabre: un mécanisme de défense acceptable en soins critique? |
| Reference | (2018) 1:2 Revue canadienne de bioéthique, 69-75. |
| https://cjb-rcb.ca/index.php/cjb-rcb/article/view/4/34 |
| Author(s) | Lévesque E, Kirby E, Bolt I, Knoppers BM, de Beaufort I, Pashayan N, Widschwendter M |
| Title | Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women’s Cancer: Points to Consider |
| Reference | Lévesque E, Kirby E, Bolt I, Knoppers B, M, de Beaufort I, Pashayan N, Widschwendter M: Ethical, Legal, and Regulatory Issues for the Implementation of Omics-Based Risk Prediction of Women’s Cancer: Points to Consider. Public Health Genomics 2018. doi: 10.1159/000492663 |
| Author(s) | Bertier G, Cambon-Thomsen A, Joly Y. |
| Title | Is it research or is it clinical? Revisiting an old frontier through the lens of Next-Generation Sequencing technologies |
| Reference | Bertier G, Cambon-Thomsen A, Joly Y, ‘‘Is it research or is it clinical? Revisiting an old frontier through the lens of Next-Generation Sequencing technologies’’, 61 (2018) European Journal of Medical Genetics, 634-641. |
| Author(s) | Borry P, Caulfield T, Estivill X, Loland S, McNamee M, Knoppers BM, on behalf of the WADA Ethics Panel |
| Title | Geolocalisation of athletes for out-of-competition drug testing: ethical considerations. Position statement by the WADA Ethics Panel |
| Reference | Borry P, Caulfield T, Estivill X, Loland S, McNamee M, Knoppers BM, on behalf of the WADA Ethics Panel, “Geolocalisation of athletes for out-of-competition drug testing: ethical considerations. Position statement by the WADA Ethics Panel”, 52:7 (2018) British Journal of Sports Medicine, 456-459. |
| Author(s) | Riggs ER, Azzariti DR, Niehaus A, Goehringer SR, Ramos EM, Lyman Rodriguez L, Knoppers BM, Rehm HL, Lese Martin C, on behalf of the Clinical Genome Resource Education Working Group |
| Title | Development of a Consent Resource for Genomic Data Sharing in the Clinical Setting |
| Reference | Riggs ER, Azzariti DR, Niehaus A, Goehringer SR, Ramos EM, Lyman Rodriguez L, Knoppers BM, Rehm HL, Lese Martin C, on behalf of the Clinical Genome Resource Education Working Group, “Development of a Consent Resource for Genomic Data Sharing in the Clinical Setting” (2018) Genetics in Medicine, 1-8. |
| Author(s) | Joly Y., Pinkesz M. |
| Title | Cadre de gouvernance des biobanques nord-américaines: une mosaïque de politiques en rapide évolution |
| Reference | Joly Y., Pinkesz M. (2018) Cadre de gouvernance des biobanques nord-américaines: une mosaïque de politiques en rapide évolution. In: Bioy X. (eds) La Régulation publique des centres de ressources biologiques: le cas des tumorothèques/ LEH Édition. |
| Author(s) | Joly Y., Pinkesz M. |
| Title | The Governance Framework of North American Biobanks: A Rapidly Evolving Policy Patchwork |
| Reference | Joly Y., Pinkesz M. (2018) The Governance Framework of North American Biobanks: A Rapidly Evolving Policy Patchwork. In: Bioy X. (eds) Public Regulation of Tumor Banks. Springer, Cham, https://doi.org/10.1007/978-3-319-90563-1_13 |
| Author(s) | Joly Y., Pinkesz M., Saulnier K.M. |
| Title | Twenty-First Century Big Data Research: A New Frontier in Health Care? |
| Reference | Joly Y., Pinkesz M., Saulnier K.M. (2018) Twenty-First Century Big Data Research: A New Frontier in Health Care? In: Catherine Régis, Lara Khoury, Robert P. Kouri (eds) Health Law at the Frontier (Les rencontres en droit de la santé- Volume 2) / Thomson Reuters, Éditions Yvon Blais. |
| Author(s) | Zawati MH |
| Title | Chapitre 8: La responsabilité civile des conseillers en génétique |
| Reference | in Mélanie Bourassa-Forcier and Anne-Marie Savard, eds. Droit de la santé, 2e édition (Quebec: LexisNexis Canada Inc, 2018), 337-393. |
| Author(s) | Thorogood A., Mäki-Petäjä-Leinonen A., Brodaty H., Dalpé G., Gastmans C., Gauthier S., Gove D., Harding R., Knoppers B.M., Rossor M., Bobrow M. |
| Title | Consent recommendations for research and international data sharing involving persons with dementia |
| Reference | (2018) 14:10 Alzheimer’s & Dementia 1334–1343
|
| https://linkinghub.elsevier.com/retrieve/pii/S1552526018301651 |
2017 Open
2017 Close
| Author(s) | Thorogood A., Deschênes St-Pierre C., Knoppers B.M. |
| Title | Substitute consent to data sharing: a way forward for international dementia research? |
| Reference | (2017) JLB, doi:10.1093/jlb/lsw063, 1 |
| Author(s) | Knoppers B.M., Isasi R., Caulfield T., Kleiderman E., et al. |
| Title | Human Gene Editing: Revisiting Canadian Policy |
| Reference | (2017) 2:3 npj Regenerative Medicine, 1 |
| Author(s) | Boycott K.M., Rath A., Chong J.X., Hartley T., Alkuraya F.S., Baynam G., Brookes A.J., Brudno M., Carracedo A., den Dunnen J.T., Dyke S.O.M., Estivill X., Goldblatt J., Gonthier C., Groft S.C., Gut I., Hamosh A., Hieter P., Höhn S., Hurles M.E., Kaufmann P., Knoppers B.M., et al. |
| Title | International Cooperation to Enable the Diagnosis of All Rare Genetic Diseases |
| Reference | (2017) 100:5 AJHG ScienceDirect |
| http://www.sciencedirect.com/science/article/pii/S0002929717301477 |
| Author(s) | Rahimzadeh V., Dove E.S., Knoppers B.M. |
| Title | The sIRB system: a single beacon of progress in the revised Common Rule? |
| Reference | (2017) American Journal of Bioethics |
| Author(s) | Knoppers B.M., Leader A., Hume S., Shoubridge E.A., et al. (including Noohi F. and Kleiderman E.) |
| Title | Mitochondrial Replacement Therapy: The Road to the Clinic in Canada |
| Reference | (2017) 39:10 Journal of Obstetrics and Gynaecology Canada, 916 |
| Author(s) | Sénécal K., Thys K., Vanassche K., Vears D.F., Knoppers B.M., Borry P. |
| Title | Reply to C Harling |
| Reference | (2017) European Journal of Human Genetics |
| Author(s) | Salerno J., Knoppers B.M., Lee L., Hlaing W., Goodman K. |
| Title | Ethics, Big Data and Computing in Epidemiology and Public Health |
| Reference | (2017) Annals of Epidemiology |
| Author(s) | Yuen R., et al. (including Knoppers B.M., Tassé A.M.) |
| Title | Whole genome sequencing resource identifies 18 new candidate genes for autism spectrum disorder |
| Reference | (2017) Nature Neuroscience |
| Author(s) | So D., Knoppers B.M. |
| Title | Ethics approval in applications for open-access clinical trial data: an analysis of researcher statements to clinicalstudydatarequest.com |
| Reference | (2017) PLOS One |
| Author(s) | Thorogood A., Knoppers B.M. |
| Title | Can research ethics committees enable clinical trial data sharing? |
| Reference | (2017) Ethics, Medicine and Public Health |
| Author(s) | Pupavac M., Zawati M.H., Rosenblatt D.S. |
| Title | A RaDiCAL gene hunt |
| Reference | Journal of Taibah University Medical Sciences, 2017. 12(3): 194-198. |
| http://www.sciencedirect.com/science/article/pii/S1658361216301470 |
| Author(s) | Friedman J.M., Cornel M.C., Goldenberf A.J., Lister K.J., Sénécal K., Vears D.F. |
| Title | Genomic Newborn Screening: Public Health Policy Considerations and Recommendations |
| Reference | (2017) 10:9 BMC Medical Genomics |
| Author(s) | Vears D.F., Sénécal K., Borry P. |
| Title | Reporting Practices for unsolicited and Secondary Findings from Next Generation Sequencing Technologies: Perspectives of Laboratory Personnel |
| Reference | (2017) Human Mutation |
| Author(s) | Bertier G., Sénécal K., Borry P., Vears D.F. |
| Title | Unsolved Challenges in Pediatric Whole-Exome Sequencing: A Literature Analysis |
| Reference | (2017) Critical Reviews in Clinical Laboratory Sciences |
| Author(s) | Illes J., Sipp D., Kleiderman E., Benjaminy S., et al. |
| Title | A blueprint for the next generation of ELSI research, training, and outreach in regenerative medicine |
| Reference | (2017) 2:1 npj Regenerative Medicine, 21 |
| Author(s) | So D., Kleiderman E., Touré S.B., Joly Y. |
| Title | Disease Resistance and the Definition of Genetic Enhancement |
| Reference | (2017) 8 Frontiers in Genetics, 40 |
| Author(s) | Nicol D., Eckstein L., Morrison M., Sherkow J. S., et al. (including Kleiderman E.) |
| Title | Key Challenges in Bringing CRISPR-mediated Somatic Cell Therapy into the Clinic |
| Reference | (2017) 9:1 Genomic Medicine, 85 |
| Author(s) | Vears D.F., Sénécal K., Clarke A.J., Jackson L., Laberge A.M., Lovrecic L., Piton A., Van Gassen K.I.I. , Yntema H.G., Knoppers B.M., Borry P. |
| Title | Points to consider for laboratories reporting results from diagnostic genomic sequencing |
| Reference | (2017)EJHG, doi: 10.1038/s41431-017-0043-9 |
| Author(s) | Vears D.F., Sénécal K., Borry P. |
| Title | Reporting practices for variants of uncertain significance from next generation sequencing technologies |
| Reference | (2017) EJHG, doi: 10.1016/j.ejmg.2017.07.016 |
| Author(s) | Dalpé G, Ngueng Feze I, Salman S, Joly Y, Hagan J, Lévesque E, Dorval V, Blouin-Bougie J, Amara N, Dorval M, Simard J |
| Title | Breast cancer risk estimation and personal insurance: a qualitative study presenting perspectives from Canadian patients and decision makers |
| Reference | (2017) 8 Frontiers in Genetics 128 |
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5613157/ |
| Author(s) | J. Gagnon, E. Lévesque, the Clinical Advisory Committee on Breast Cancer Screening and Prevention (F. Borduas, J. Chiquette, C. Diorio, N. Duchesne, M. Dumais, L. Eloy, W. Foulkes, N. Gervais, L. Lalonde, B. L’Espérance, S. Meterissian, L. Provencher, J. Richard, C. Savard, I. Trop, N. Wong), B.M. K |
| Title | Recommendations on breast cancer screening and prevention in the context of implementing risk stratification: impending changes to current policies |
| Reference | (2016) 23;6 Current Oncology e615 |
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5176389/ |
| Author(s) | Joly Y, Ngueng Feze I., Song L.Q, Knoppers B.M. |
| Title | Comparative Approaches to Genetic Discrimination: Chasing Shadows? |
| Reference | 2017 May;33(5):Trends. Genet. 299-302. doi: 10.1016/j.tig.2017.02.002. Epub 2017 Mar 30. |
| https://www.ncbi.nlm.nih.gov/pubmed/28365141 |
| Author(s) | Granados Moreno P., Ngueng Feze I., Joly Y. |
| Title | Does the end justify the means? A comparative study of the use of DNA testing in the context of family reunification |
| Reference | (2017) 4:2 Journal of Law and the Biosciences, 250 |
| https://academic.oup.com/jlb/article/4/2/250/3798619 |
| Author(s) | Granados Moreno P., Joly Y., Knoppers B. M. |
| Title | Public–Private Partnerships in Cloud-Computing Services in the Context of Genomic Research |
| Reference | (2017) 4:3 Frontiers in Medicine 1 |
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5247451/ |
| Author(s) | Emond-Rheault J.-G, et al (including Joly Y., Ngueng Feze I., Song L.) |
| Title | A Syst-OMICS approach to ensuring food safety and reducing the economic burden of Salmonellosis |
| Reference | (2017) 8(996):1 Frontiers in Microbiology |
| https://www.frontiersin.org/articles/10.3389/fmicb.2017.00996/full |
| Author(s) | Joly Y, Dupras C, Ngueng Feze I, Song L |
| Title | Genetic discrimination in Quebec - A flexible and proactive approach to address a complex social issue |
| Reference | Policy Brief (Montreal: Genome Quebec, 2017) |
| http://www.genomequebec.com/DATA/PUBLICATION/32_en~v~Genetic_Discrimination_in_Quebec_-_Policy_Brief.pdf |
| Author(s) | Joly Y, Dupras C, Ngueng Feze I, Song L |
| Title | La discrimination génétique au Québec: Une approche proactive et flexible pour contrer un enjeu de société complexe |
| Reference | Document d'orientation politique (Montréal: Génome Québec, 2017) |
| http://www.genomequebec.com/DATA/PUBLICATION/32_fr~v~La_discrimination_genetique_au_Quebec_-_document_d_orientation_politique.pdf |
| Author(s) | Roy M-C., Dupras C., Ravitsky V. |
| Title | The epigenetic effects of assisted reproductive technologies: ethical considerations |
| Reference | (2017) 8:4 Journal of Developmental Origins of Health and Disease, 436 |
| http://dx.doi.org/10.1017/S204017441700034 |
| Author(s) | Williams-Jones B., Boulanger R., Couture V., Dupras C. |
| Title | Imagining truly open access bioethics: from dreams to reality |
| Reference | (2017) 17:10 American Journal of Bioethics, 19 |
| http://dx.doi.org/10.1080/15265161.2017.1365193 |
| Author(s) | Dupras C., Williams-Jones B., Ravitsky V. |
| Title | Biopolitical barriers to a Potterian bioethics: the (potentially) missed opportunity of epigenetics |
| Reference | (2017) 17:9 American Journal of Bioethics, 15 |
| http://dx.doi.org/10.1080/15265161.2017.1353173 |
| Author(s) | Saulnier K.M., Dupras C. |
| Title | Race in the postgenomic era: social epigenetics calling for interdisciplinary ethical safeguards |
| Reference | (2017) 17:9 American Journal of Bioethics, 58 |
| http://dx.doi.org/10.1080/15265161.2017.1353182 |
| Author(s) | Dupras C. |
| Title | Implications éthiques, légales et sociales de l'épigénétique: perspectives rhétorique, dialectique et réflexive sur l'application des connaissances scientifiques |
| Reference | Thèse de doctorat (Montréal: Université de Montréal - Papyrus, 2017) |
| https://papyrus.bib.umontreal.ca/xmlui/handle/1866/19325 |
| Author(s) | Dupras C., Jager L., Frater N., Goniotaki, D. |
| Title | Crossing mind barriers: a precautionary approach to neuroenhancement strategies |
| Reference | Future-Human.Life (Geneva: Neohumanitas, 2017) |
| https://docs.wixstatic.com/ugd/833c57_2e26c1e590354000aa6d7310b16a4edd.pdf |
| Author(s) | Murdoch B., Ravitsky V., Ogbogu U., Ali-Khan S., Bertier G., Birko S., Bubela T., DeBeer J., Dupras C., Ellis M., Granados-Moreno P., Joly Y., Kamenova K., Marcon A., Master Z., Paulden M., Rousseau R., Caulfield T. |
| Title | Non-invasive prenatal testing and the unveiling of an impaired translation process |
| Reference | (2017) 39:1 Journal of Obstetrics and Gynaecology Canada, 10 |
| http://dx.doi.org/10.1016/j.jogc.2016.09.004 |
| Author(s) | Thorogood A., Cook-Deegan R., Knoppers B.M . |
| Title | Public Variant Databases: Liability? |
| Reference | Genetics in Medicine, 19:838–841 |
| Author(s) | Moore S., Tassé A.M., Thorogood A., Winship I., Zawati M. & Doerr M. |
| Title | A Systemic Review of Consent Processes for Mobile App Mediated Research |
| Reference | JMIR mHealth and uHealth, 5(8). |
| Author(s) | Tassé A.M., Kirby E. |
| Title | Is Written Informed Consent Outdated? |
| Reference | (2017) 27:2 European Journal of Public Health 195-196. |
| Author(s) | Joly Y., Song L., Ngueng Feze I., Knoppers B.M. |
| Title | Normative Approaches to Address Genetic Discrimination: Placebo or Placenta? |
| Reference | SSRN, 2017. |
| Author(s) | Wang S., Jiang X., Tang H., Wang X., Bu D., Carey K., Dyke S.O., Fox D., Jiang C., Lauter K., Malin B., Sofia H., Telenti A., Wang L., Wang W., Ohno-Machado L. |
| Title | A community effort to protect genomic data sharing, collaboration and outsourcing |
| Reference | NPJ Genom Med. 2017. doi:10.1038/s41525-017-00.6-1. eCollection 2017. Review. |
| Author(s) | Dyke S.O.M., Knoppers B.M., Hamosh A., Firth H.V., Hurles M., Brudno M., Boycott K.M., Philippakis A.A., Rehm H.L. |
| Title | "Matching" consent to purpose: The example of the Matchmaker Exchange |
| Reference | Hum Mutat. 38(10): 1281-1285. doi:10.1002/humu.23278. Epub 2017 Jul 12. |
| Author(s) | Breden, F., Prak, E.T.L., Peters, B., Rubelt, F., Schramm, C.A., Busse, C.E., Vander Heiden, J.A., Christley, S., Bukhari, S.A.C., Thorogood, A. and Matsen IV, F.A. |
| Title | Reproducibility and reuse of Adaptive immune receptor repertoire Data. |
| Reference | Frontiers in immunology, 8. |
| Author(s) | Thorogood A., and Knoppers B.M. |
| Title | Human Cell Atlas White Paper: Ethics, Legal, and Regulatory Principles |
| Reference | (Oct 2017). |
| https://www.humancellatlas.org/files/HCA_WhitePaper_18Oct2017.pdf |
| Author(s) | Deverka P.A., Majumder M.A., Villanueva A.G., et al. (including Knoppers B.M.) |
| Title | Creating a Data Resource: What Will It Take to Build a Medical Information Commons? |
| Reference | Genome Medicine. 2017; 9(84):1-5. |
| Author(s) | Philips M., Dove E.S., Knoppers B.M. |
| Title | Criminal Prohibition of Wrongful Re-identification: Legal Solution or Minefield for Big Data? |
| Reference | Journal of Bioethical Inquiry. 2017; 14(4): 527-539. |
| Author(s) | Knoppers B.M., Thorogood A. |
| Title | Ethics and Big Data in Health |
| Reference | Current Opinion in Systems Biology. 2017; 4: 53-57. |
| Author(s) | Lawler M., et al. (including Knoppers B.M. and the Clinical Cancer Genome Task Team of the Global Alliance for Genomics and Health) |
| Title | Sharing Clinical and Genomic Data on Cancer - The Need for Global Solutions |
| Reference | The New England Journal of Medicine. 2017; 376(21): 2006-2009. |
| Author(s) | Song L |
| Title | How far is it from us: genetic discrimination? |
| Reference | Chinese Academy of Social Science Net (in Chinese) |
| http://www.cssn.cn/fx/201708/t20170816_3611620.shtml |
| Author(s) | Granados Moreno P. |
| Title | Justificación teórica de las patentes sobre información genética humana |
| Reference | Propiedad Intelectual. Fundamento y Crítica (Colombia: U. Externado de Colombia, 2017) |
| http://publicaciones.uexternado.edu.co/propiedad-intelectual-fundamento-y-critica-teoria-juridica.html |
| Author(s) | Zawati M.H., Lang M. |
| Title | Biobank donors and the concept of benefit: time for reciprocity |
| Reference | (2017) 4:2 J of Law and Biosciences, 371-376. |
| Author(s) | Choquet K, Yang S, Moir RD, Forget D., et al. (including Noohi F.) |
| Title | Absence of neurological abnormalities in mice homozygous for the Polr3a G672E hypomyelinating leukodystrophy mutation |
| Reference | Molecular Brain. 2017; 10(1). |
| Author(s) | Rahimzadeh V., Sénécal K., Kleiderman E., Knoppers B.M. |
| Title | Minors and incompetent adults: A tale of two populations |
| Reference | Neuroethics: Anticipating the Future (New York: Oxford University Press, 2017) |
| Author(s) | Dalpé G., Ngueng Feze I., Salman S., Joly Y., Hagan J., Lévesque E., Dorval V., Blouin-Bougie J., Amara N., Dorval M., Simard J. |
| Title | Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers |
| Reference | (2017) 8 Frontiers in Genetics
|
| http://journal.frontiersin.org/article/10.3389/fgene.2017.00128/full |
2016 Open
2016 Close
| Author(s) | Dyke S.O.M., Philippakis A.A., Rambla De Argila J., Paltoo D.N., Luetkemeier E.S., Knoppers B.M., Brookes A.J., Spalding J.D., Thompson M., Roos M., Boycott K.M., Brudno M., Hurles M., Rehm H.L., Matern A., Fiume M., Sherry S.T. |
| Title | Consent Codes: Upholding Standard Data Use Conditions |
| Reference | (2016) 12:1: e1005772.doi.10.137/journal.pgen.1005772, PLOS Genetics, 1 |
| Author(s) | Joly Y., So D., Osien G., Crimi L., Bobrow M., Chalmers D., Wallace S., Zeps N., Knoppers B.M. |
| Title | A Decision Tool to Guide the Ethics Review of a Challenging Breed of Emerging Genomics Projects |
| Reference | (2016) 24:8 European Journal of Human Genetics, 1099 |
| Author(s) | Isasi R., Kleiderman E., Knoppers B.M. |
| Title | Editing Policy to Fit the Genome? |
| Reference | (2016) 351:6271 Science, 337 |
| Author(s) | Clayton E.W., Zawati M.H. |
| Title | Chapter 6 - Legal Aspects of Health Applications of Genomics |
| Reference | Genomics and Society - Ethical, Legal, Cultural and Socioeconomic Implications (London: Elsevier, 2016) |
| http://www.sciencedirect.com/science/article/pii/B9780124201958000069 |
| Author(s) | Joly Y., de Vries-Seguin E., Chalmers D., Ouellette B.F.F., Yamada J., Bobrow M., Knoppers B.M. |
| Title | Analysis of five years of controlled access and data sharing compliance at the International Cancer Genome Consortium |
| Reference | (2016) 48:3 Nature Genetics, 224 |
| Author(s) | Salman S., Vardatsikos G., Avard D., Palmour N., Dewar K. & Zawati M.H. |
| Title | FMT Happens: Regulating Fecal Microbiota Therapy in Canada; What you Need to Know |
| Reference | (2016) 8:1 World Medical & Health Policy, 95-106 |
| Author(s) | Dove E.S., Townend D., Meslin E.M., Bobrow M., Littler K., Nicoll D., de Vries J., Junker A., Garattini C., Bovenberg J., Shabani M., Lévesque E., Knoppers B.M. |
| Title | Ethics review for international data-intensive research |
| Reference | (2016) 351:6280 Science, 1399 |
| Author(s) | Dove E.S., Thompson B., Knoppers B.M. |
| Title | A step forward for data protection and biomedical research |
| Reference | (2016) 387:10026 The Lancet, 1374 |
| Author(s) | Rahimzadeh V., Knoppers B.M. |
| Title | How mutually recognizable is mutual recognition? An international terminology index of research ethics review policies in the USA, Canada, UK and Australia |
| Reference | (2016) 13:2 Personalized Medicine, 101 |
| Author(s) | Rahimzadeh V., Dyke S.O.M., Knoppers B.M. |
| Title | An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health |
| Reference | (2016) 14:3 Biopreservation and Biobanking, 256 |
| Author(s) | Rothstein M.A., Knoppers B.M., Harrell J.L. |
| Title | Comparative Approaches to Biobanks and Privacy |
| Reference | (2016) 44:1 Journal of Law, Medicine and Ethics, 161 |
| Author(s) | Borry P., Sénécal K., Knoppers B.M. |
| Title | Do It Yourself Newborn Screening |
| Reference | (2016) JAMA Pediatrics, doi:10.001/jamapediatrics.2016.0166, E1 |
| Author(s) | Siu L.L., Lawler M., Haussler D., Knoppers B.M., Lewin J., Vis D.J., Liao R.G., Andre F., Banks I., Barrett J.C., Caldas C., Aranha Camargo A., Fitzgerald R.C., Mao M., Mattison J.E., Pao W., Sellers W.R., Sullivan P., Teh B.T., Ward R.L., ZenKlusen J.C., Sawyers C.L., Voest E.E. |
| Title | Facilitating a culture of responsible and effective sharing of cancer genome data |
| Reference | (2016) 22:5 Nature Medicine, 464 |
| Author(s) | Saulnier K., Joly Y. |
| Title | Locating biobanks in the Canadian Privacy Maze |
| Reference | (2016) 44:1 Journal of Law Medicine and Ethics, 7 |
| Author(s) | Stoddart J., Chan B., Joly Y. |
| Title | The European Union's adequacy approach to privacy and international data sharing in health research |
| Reference | (2016) 44:1 Journal of Law Medicine and Ethics, 143 |
| Author(s) | Joly Y., Salman S., Ngueng Feze I., Granados Moreno P., Stanton-Jean M., Lacey J., Labelle M., Dench J., Dove E.S., Atak I., Bellefleur C., Heinemann T., Langlais H., Love R. |
| Title | DNA testing for family reunification in Canada: points to consider |
| Reference | (2016) doi: 10.1007/s12134-016-0496-7 Journal of International Migration and Integration, 1 |
| Author(s) | Salman S., Ngueng Feze I., Joly Y. |
| Title | Disclosure of insurability risks in research and clinical consent forms |
| Reference | (2016) Global Bioethics, DOI:10.1080#11287462.2016.1183442, 1 |
| Author(s) | Fortier I., Raina P., Van den Heuvel E.R., Griffith L.E., Craig C., Saliba M., Doiron D., Stolk R.P., Knoppers B.M., Ferretti V., Granda P., Burton P. |
| Title | Maelstrom Research guidelines for rigorous retrospective data harmonization |
| Reference | (2016) International Journal of Epidemiology, doi:10.1093/ije/dyw075, 1 |
| Author(s) | Briceño Moraia L., Kaye J., Tassé A.M., Knoppers B.M., Mitchell C., Soini S., Hoppe N., Wallace S.E., Øien M. |
| Title | A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and the United Kingdom |
| Reference | (2016) Medical Law International, DOI: 10.1177/0968533215571956, 1 |
| Author(s) | Shabani M., Knoppers B.M., Borry P |
| Title | Genomic Databases, Access Review, and Data Access Committees |
| Reference | Medical and Health Genomics (London: Elsevier, 2016) |
| Author(s) | Sénécal K., Thys K., Vears D.F., Van Assche K., Knoppers B.M., Borry P. |
| Title | Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing |
| Reference | (2016) 24:11 European Journal of Human Genetics, 1559 |
| Author(s) | Sénécal K., Thorogood A., Parry D., Joly, Y., Knoppers B.M. |
| Title | The Quebec Network of Applied Genetic Medicine (RMGA). Consolidated Statement of Principles |
| Reference | (Montreal, RMGA, 2016) |
| Author(s) | Sénécal K., Thorogood A., Parry D., Joly Y., Knoppers B.M. |
| Title | Énoncé de principes consolidé du Réseau de Médecine génétique appliquée (RMGA) du Québec |
| Reference | (Montréal, RMGA, 2016) |
| Author(s) | Szego M.J., Zawati, M.H. |
| Title | Whole Genome Sequencing as a Genetic Test for Autism Spectrum Disorder: From Bench to Bedside and then Back Again |
| Reference | J Can Acad Child Adolesc Psychiatry. 2016 Spring; 25(2): 116–121. |
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4879951/ |
| Author(s) | Townend D., Dove E.S., Nicol D., Bovenberg J., Knoppers B.M. |
| Title | Streamlining ethical review of data intensive research |
| Reference | (2016) 354, BMJ, .i4181, 1 |
| Author(s) | Green R.C., Goddard K.A.B., Jarvik G.P., Amendola L.M., Appelbaum P.S., Berg J.S., Bernhardt B.A., Biesecker L.G., Biswas S., Blout C.L., Bowling K.M., Brothers K.B., Burke W., Caga-anan C.F., Chinnaiyan A.M., Chung W.K., Clayton E.W., Cooper G.M., East K., Evans J.P., [...] Knoppers B.M., et al |
| Title | Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine |
| Reference | (2016) 98:6 The American Journal of Human Genetics, 1051 Correction: (2016) 99:1 The American Journal of Human Genetics, 246 |
| Author(s) | Saulnier K.M., So D., Joly Y. |
| Title | Teaching to the test |
| Reference | (2016) 3:2 Journal of Law and the Biosciences, 373 |
| Author(s) | Anand S.S., Tu J.V., Awadalla P., Black S., Boileau C., Busseuil D., Desai D., Després J.P., de Souza R.J., Dummer T., Jacquemont S., Knoppers B., Larose E., Lear S.A., Marcotte F., Moody A.R., Parker L., Poirier P., Robson P.J., Smith E.E., Spinelli J.J., Tardif J.C., Teo K.K., Tusevljak N., et al |
| Title | Rationale, design, and methods for Canadian alliance for healthy hearts and minds cohort study (CAHHM) - a Pan Canadian cohort study |
| Reference | (2016) 16:1 BMC Public Health, 650 |
| Author(s) | Tassé A.M., Bledsoe M.J., Giepmans L., Rahimzadeh V. |
| Title | Legal and Ethical Implications of Data Sharing in International Biobanking Research: Toward a Global Response |
| Reference | (2016) 14:3 Biopreservation and Biobanking, 193 |
| Author(s) | Tassé A.M. |
| Title | A Comparative Analysis of the Legal and Bioethical Frameworks Governing the Secondary Use of Data for Research Purposes |
| Reference | (2016) 14:3 Biopreservation and Biobanking, 207 |
| Author(s) | Kaye J., Briceño Moraia L., Mitchell C., Bell J., Bovenberg J.A., Tassé A.M., Knoppers B.M. |
| Title | Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts |
| Reference | (2016) 14:3 Biopreservation and Biobanking, 201 |
| Author(s) | Bovenberg J.A., de Hoogh K., Knoppers B.M., Hveem K., Hansell A.L. |
| Title | Don’t Take It Personal EU legal aspects of procuring and protecting Environmental Exposure Data in Population Biobanks through the use of a Geo-Information Systems Toolkit |
| Reference | (2016) 14:3 Biopreservation and Biobanking, 217 |
| Author(s) | Tassé A.M., Kirby E., Fortier I. |
| Title | Developing an Ethical and Legal Interoperability Assessment Process for Retrospective Studies |
| Reference | (2016) 14:3 Biopreservation and Biobanking, 249 |
| Author(s) | Dyke S.O.M., Dove E.S., Knoppers B.M. |
| Title | Sharing health-related data: a privacy test? |
| Reference | (2016) Genomic Medicine, doi:10.1038/npjgenmed.2016.24, 1 |
| Author(s) | Knoppers B.M., Nguyen M.T., Sénécal K., Tassé A.M., Zawati M.H. |
| Title | Next-Generation Sequencing and the Return of Results |
| Reference | doi: 10.1101/cshperspect.a026724 Cold Spring Harb Perspect Med 2016, 1 |
| Author(s) | Hagan J., Lévesque E., Knoppers B.M. |
| Title | Influence des facteurs organisationnels sur l'implantation d'une approche personnalisee de depistage du cancer du sein |
| Reference | (2016) 28:3 Sante publique, 353 |
| Author(s) | Jeremic V., Sénécal K., Borry P., Chokoshvili D., Vears D.F. |
| Title | Participation of Children in Medical Decision-Making: Challenges and Potential Solutions |
| Reference | (2016) Bioethical Inquiry, doi:10.1007/s11673-016-9747-8, 1 |
| Author(s) | Bertier G., Hétu M., Joly Y. |
| Title | Unsolved challenges of clinical whole-exome sequening: a systematic literature review of end-users' views |
| Reference | (2016) 9:52 BMC Medical Geno ics, doi.10.1186/s12920-016-0213-6, 1 |
| Author(s) | Joly Y., So D., Saulnier K., Dyke S.O. |
| Title | Epigenetics ELSI: Darker Than You Think? |
| Reference | (2016) 32:10 Trends in Genetics, 591 |
| Author(s) | Esquivel-Sada D., Hagan J., Sénécal K., Avard D., Knoppers B.M., Sinnett D. |
| Title | Perspectives de parents concernant les découvertes fortuites en recherche pédiatrique : la voix manquante au débat?Parental Perspectives on Incidental Findings in Pediatric Research: The Missing Voice in the Debate |
| Reference | (2016) 4:2 Serie E : Droit, sante et societe, 15 |
| Author(s) | Dyke S.O.M., Saulnier K.M., Pastinen T., Bourque G., Joly Y. |
| Title | Evolving data access policy: The Canadian context |
| Reference | (2016) 1 FACETS, doi: 10.1139/facets-2016-0002, 138 |
| Author(s) | Shabani M., Thorogood A., Borry P. |
| Title | Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts |
| Reference | (2016) 24:12 European Journal of Human Genetics, 1671 |
| Author(s) | Dyke S.O.M., Kirby E., Shabani M., Thorogood A., Kato K., Knoppers B.M. |
| Title | Registered access: a 'Triple-A' approach |
| Reference | (2016) 24:12 European Journal of Human Genetics, 1715 |
| Author(s) | Thorogood A., Simkevitz H., Phillips M., Dove E.S., Joly Y. |
| Title | Protecting the Privacy of Canadians' Health Information in the Cloud |
| Reference | (2016) 14 Canadian Journal of Law and Technology, 173 |
| Author(s) | Knoppers B.M. |
| Title | Precision medicine: a matter of regulation or collaboration? |
| Reference | (2106) Journal of Law and the Biosciences, doi: 10.1093/jlb/lsw049, 1 |
| Author(s) | Charlebois K., Palmour N., Knoppers B.M. |
| Title | The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues |
| Reference | (2016) PLoS One, doi: 10.1371/journal.pone.0164347, 1 |
| Author(s) | Bledsoe M.J., Henderson M., Tassé A.M., Knoppers B.M. |
| Title | International Biobanking Summit V: Harmonizing Privacy Laws to Enable International Biobank Research |
| Reference | (2016) 14:5 Biopreservation and Biobanking, 452 |
| Author(s) | Longo C., Rahimzadeh V., O'Doherty K., Bartlett G. |
| Title | Addressing ethical challenges at the intersection of pharmacogenomics and primary care using deliberative consultations |
| Reference | (2016) Pharmacogenomics, doi: 10.2217/pgs-2016-0092, 1 |
| Author(s) | Strom B.L., Buyse M.E., Hughes J., Knoppers B.M. |
| Title | Data Sharing - Is the Juice Worth the Squeeze? |
| Reference | (2016) 375:17 The New England Journal of Medicine, 1608 |
| Author(s) | Bertier G., Carrot-Zhang J., Ragoussis V., Joly Y. |
| Title | Integrating precision cancer medicine into healthcare - policy, practice, and research challenges |
| Reference | (2016) 8:108 Genome Medicine doi 10.1186/s13073-016-0362-4, 1 |
| Author(s) | Phillips M., Knoppers B.M. |
| Title | The discombobulation of de-identification |
| Reference | (2016) 34:11 Nature Biotechnology, 1102 |
| Author(s) | Knoppers B.M., Sénécal K., Boisjoli J., Borry P., Cornel M.C., Fernandez C.V., Grewal J., Holm I.A., Nelson E., Pinxten W., Shabani M., Tassé A.M., Zawati M.H., Wright Clayton E, on behalf of the P3G International Paediatric Research Platform |
| Title | Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority |
| Reference | (2016) 38:6 IRB: Ethics and Human Research, 1 |
| Author(s) | Ghaly M, Sadoun E, Alkuraya F, Fakhro K, Zawati M.H., Ismail S & Ben-Omran T |
| Title | Genomics in the Gulf Region and Islamic Ethics |
| Reference | A Special Report in Collaboration with the Research Center for Islamic Legislation and Ethics |
| Author(s) | Isasi R., Rahimzadeh V., Charlebois K. |
| Title | Uncertainty and innovation: Understanding the role of cell-based manufacturing facilities in shaping regulatory and commercialization environments |
| Reference | (2016) Applied & Translational Genomics, doi:http://dx.doi.org/10.1016/j.atg.2016.11.001, 1 |
| Author(s) | Dove E.S., Laurie G.T., Knoppers B.M. |
| Title | Data Sharing and Privacy |
| Reference | Genomic and Personalized Medicine (Waltham, MA: Elsevier, 2017) |
| Author(s) | Stunnenberg H, The International Human Epigenome Consortium (including Joly Y), Hirst M |
| Title | The International Human Epigenome Consortium: A Blueprint for Scientific Collaboration and Discovery |
| Reference | (2016) 167:5 Cell, 1145 |
| Author(s) | Murdoch B, Ravitsky V, Ogbogu U, Ali-Khan S, Bertier G, Birko S, Bubela T, De Beer J, Dupras C, Ellis M, Granados Moreno P, Joly Y, Kamenova K, Master Z, Marcon A, Paulden M, Rousseau F, Caulfield T |
| Title | Non-Invasive Prenatal Testing and the Unveiling of an Impaired Translation Process |
| Reference | (2016) J Obstet Gynaecol Can, DOI: http://dx.doi.org/10.1016/j.jogc.2016.09.004 |
| Author(s) | Joly Y, Dyke SOM, Knoppers BM, Pastinen T |
| Title | Are Data Sharing and Privacy Protection Mutually Exclusive? |
| Reference | (2016) 167:5 Cell, 1150 |
| Author(s) | Warner A, Moore H, Reinhard D, Ball L, Knoppers BM |
| Title | Harmonizing Global Biospecimen Consent Practices to Advance Translational Research - A Call to Action |
| Reference | (2016) Clin Pharmacol Ther, DOI: 10.1002/cpt.461, 1 |
| Author(s) | The Global Alliance for Genomics and Health (including Knoppers BM) |
| Title | A federated ecosystem for sharing genomic, clinical data – Silos of genome data collection are being transformed into seamlessly connected, independent systems |
| Reference | (2016) 352:6291 Science, 1278 |
| Author(s) | Dalpé G, Kirby E, Ngueng Feze I, Tassé A-M, Knoppers BM, Hamet P, Tremblay J, Phillips MS, Joly Y |
| Title | The Gatekeeping Function in Personalized Medicine Initiatives |
| Reference | (2016) 14:1 Curr Pharmacogenomics Person Med, 36 |
| http://www.eurekaselect.com/openurl/content.php?genre=article&issn=1875-6921&volume=14&issue=1&spage=36 |
| Author(s) | Sénécal K., Thys K., Vanassche K., Vears D.F., Knoppers B.M., Borry P. |
| Title | Reply to Kranendonk |
| Reference | (2016) 25; Journal of Human Genetics, doi:10.1038/ejhg.2016.160. |
| https://www.nature.com/ejhg/journal/v25/n2/pdf/ejhg2016160a.pdf?origin=ppub |
| Author(s) | Zawati M.H., Knoppers B.M. |
| Title | Population Biobanks and the Principle of Reciprocity |
| Reference | Hainault P, Vaught J, Pasterk M and Zatlookal K, eds., Biobanking of Human Specimens, (New York: Springer, 2016). |
| http://www.springer.com/gp/book/9783319551180#aboutBook |
| Author(s) | E Lévesque |
| Title | Enjeux éthiques et légaux de la mise en banque de données pour la recherche sur la maltraitance |
| Reference | Actes de la journée d'échanges sur l'entreposage, la mise en accès, l'exploitation et le jumelage des données brutes pour faire avancer la recherche sur la violence et la maltraitance envers les enfants du Québec, Laboratoire de recherche en épidémiologie de la maltraitance, 2016. |
| Author(s) | Nguyen MT, Knoppers BM |
| Title | Prenatal and Preimplantation Genetic Diagnosis: International Policy Perspectives |
| Reference | Milunsky A & Milunsky J (eds.) Genetic Disorders and the Fetus (7th Edition). London: Wiley-Blackwell, 2016. |
| Author(s) | Global Alliance for Genomics and Health … Thorogood A, … |
| Title | A Federated Ecosystem for Sharing Genomic, Clinical Data. |
| Reference | Science, 352(6291):1278-1280. |
| Author(s) | Thorogood A., Zawati M.H. |
| Title | International Guidelines for Privacy in Genomic Biobanking (Or the Unexpected Virtue of Pluralism) |
| Reference | (2016) 43 Journal of Law, Medicine and Ethics, Special Issue, 690-702. |
| Author(s) | Gomez-Perez A., Kyryakov P., Burstein M.T., Asbah N., Noohi F., Iouk T., Titorenko VI. |
| Title | Empirical Validation of a Hypothesis of the Hormetic Selective Forces Driving the Evolution of Longevity Regulation Mechanisms |
| Reference | Frontiers in Genetics. 2016; 7(216). |
| Author(s) | Dalpé G., Kirby E., Ngueng Feze I., Tassé A.M., Knoppers B.M., Hamet P., Tremblay J., Phillips M.S., Joly Y. |
| Title | The Gatekeeping Function in Personalized Medicine Initiatives |
| Reference | (2016) 14:1 CPPM 36–49
|
| http://www.eurekaselect.com/openurl/content.php?genre=article&issn=1875-6921&volume=14&issue=1&spage=36 |
2015 Open
2015 Close
| Author(s) | Rahimzadeh V, Avard D, Sénécal K, Knoppers BM, Sinnett D |
| Title | To disclose, or not to disclose? Context matters |
| Reference | (2015) 23:3 European Journal of Human Genetics, 279 |
| Author(s) | Mascalzoni D., Dove E.S., Rubinstein Y., Dawkins H.J.S., Kole A., McCormack P., Woods S., Riess O., Schaefer F., Lochmüller H., Knoppers B.M., Hansson M. |
| Title | International Charter of principles for sharing bio-specimens and data |
| Reference | (2015) 23:6 European Journal of Human Genetics, 721 Correction: (2016) 24:7 European Journal of Human Genetics, 1096 |
| http://www.nature.com/ejhg/index.html |
| Author(s) | Dove E.S., Joly Y., Tassé A.M., P3G International Steering Committee, ICGC Ethics and Policy Committee, Knoppers B.M. |
| Title | Genomic cloud computing: legal and ethical points to consider |
| Reference | (2014) 23:10 European Journal of Human Genetics, 1271 |
| http://www.nature.com/ejhg/index.html |
| Author(s) | Caulfield T., Kamenova K., Ogbogu U., Zarzeczny A., Baltz J., Benjaminy S., Cassar P.A., Clark M., Isasi R., Knoppers B., Knowles L., Korbutt G., Lavery J.V., Lomax G.P., Master Z., McDonald M., Preto N., Toews M. |
| Title | Research ethics and stem cells: Is it time to re-think current approaches to oversight? |
| Reference | (2015) 16:1 EMBO Reports, 2 |
| Author(s) | Kleiderman E., Avard D., Besso A., Ali-Khan S., et al. |
| Title | Disclosure of incidental findings in cancer genomic research: investigators' perceptions on obligations and barriers |
| Reference | (2015) 88:4 Clinical Genetics, 320-326 |
| Author(s) | Cunningham S., O'Doherty K.C., Sénécal K., Secko D., Avard D. |
| Title | Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities |
| Reference | (2015) 6:2 Journal of Community Genetics, 117 |
| Author(s) | Lomax G., Hull S.C., Isasi R. |
| Title | The Discuss Project: Revised Points To Consider for the Derivation of Induced Pluripotent Stem Cell Lines from Previously Collected Research Specimens |
| Reference | (2015) Stem Cells Translational Medicine, doi: 10.5966/sctm.2014-0192, 1 |
| Author(s) | Howard H.C., Knoppers B.M., Cornel M.C., Wright Clayton E., Sénécal K., Borry P. |
| Title | Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes |
| Reference | (2015) 23:12 European Journal of Human Genetics, 1593 |
| Author(s) | Nguyen M.T., Charlebois K. |
| Title | The clinical utility of whole-exome sequencing in the context of rare diseases – the changing tides of medical practice |
| Reference | (2015) Clinical Genetics, doi: 10.1111/cge.12546, 1 |
| Author(s) | Shabani M., Knoppers B.M., Borry P. |
| Title | From the principles of genomic data sharing to the practices of data access committees |
| Reference | (2015) EMBO Molecular Medicine, doi 10.15252/emmm.201405002, 1 |
| Author(s) | Bovenberg J., Hansell A., de Hoogh K., Knoppers B.M. |
| Title | Nature, nurture & exposure: Connecting biobank data with geographic data could yield public and individual health benefits, but risks to human rights need to be assessed |
| Reference | (2015) 16:4 EMBO Reports, 404 |
| Author(s) | Bovenberg J., Knoppers BM, Hansell A., de Hoogh K. |
| Title | Exposing participants? Population Biobanks Go Geo |
| Reference | (2015) 24:2 European Journal of Human Genetics, 155 |
| Author(s) | Dove E.S., Zawati M.H. |
| Title | Amendments to the Civil Code of Québec's Research Provisions: A Legislative Comment |
| Reference | (2015) 8:1 McGill JL & Health 79 |
| http://mjlh.mcgill.ca/pdfs/vol8-1/MJLH%208_1_DoveZawati.pdf |
| Author(s) | Lane M., Ngueng Feze I., Joly Y. |
| Title | Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors |
| Reference | (2015) 24:6 Journal of Genetic Counseling, 1022 |
| Author(s) | Boycott K., Hartley T., Adam S., Bernier F., Chong K., Fernandez B.A., Friedman J.M., Geraghty M.T., Hume S., Knoppers B.M., Laberge A.-M., Majewski J., Mendoza-Londono R., Meyn M.S., Michaud J.L., Nelson T.N., Richer J., Sadikovic B., Skidmore D.L., Stockley T., [...] Zawati M.H., et al |
| Title | The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists |
| Reference | (2015) 52:7 Journal of Medical Genetics, 431 |
| Author(s) | Isasi R., Knoppers B.M. |
| Title | Oversight of human inheritable genome modification |
| Reference | (2015) 33:5 Nature Biotechnology, 454 |
| Author(s) | Bosley K.S., Botchan M., Bredenoord A.L., Carroll D., Charo R.A., Charpentier E., Cohen R., Corn J., Doudna J., Feng G., Greely H.T., Isasi R., Ji W., Kim J.-S., Knoppers B.M., Lanphier E., Li J., Lovell-Badge R., Martin G.S., Moreno J., Naldini L., Pera M., Perry A.C.F., Venter J.C, et al |
| Title | CRISPR germline engineering - the community speaks |
| Reference | (2015) 33:5 Nature Biotechnology, 478 |
| Author(s) | Rahimzadeh V. |
| Title | A missed opportunity for shared responsibility in adolescent contraception |
| Reference | (2015) 7:1 Journal of Adolescent and Family Health, 1 |
| Author(s) | Ngueng Feze I., Salman S., Joly Y. |
| Title | Implications for Health and Life Insurances and Other Legal Aspects of Genetic Testing |
| Reference | Movement Disorder Genetics (Switzerland: Springer International Publishing, 2015) |
| Author(s) | Zawati M.H., Junker A., Knoppers B.M., Rahimzadeh V. |
| Title | Streamlining review of research involving humans: Canadian models |
| Reference |
(2015) 52:8 J. Med. Genet., 566 |
| http://jmg.bmj.com/content/current |
| Author(s) | Pereira Beak C., Chargé S.B., Isasi R., Knoppers B.M. |
| Title | Developing Educational Resources to Advance Umbilical Cord Blood Banking and Research: A Canadian Perspective |
| Reference | (2015) 37:5 Journal of Obstetrics and Gynaecology Canada, 443 |
| Author(s) | Birko S., Dove E.S., Ozdemir V. |
| Title | A Delphi Technology Foresight Study: Mapping Social Construction of Scientific Evidence on Metagenomics Tests for Water Safety |
| Reference | (2015) 10:6 PLOS One, doi:10:1371/journal.pone.0129706, 1 |
| Author(s) | Bertier G., Zawati M.H., Joly Y. |
| Title | The Role of Whole Genome and Whole Exome Sequencing in Preventive Genomic Sequencing Programs |
| Reference | (2015) 15:7 Am. J. Bioethics, 22 |
| http://www.tandfonline.com/doi/pdf/10.1080/15265161.2015.1039732 |
| Author(s) | Dove E.S., Joly Y., Knoppers B.M. |
| Title | International genomic cloud computing: 'mining' the terms of service |
| Reference | Privacy and Legal Issues in Cloud Computing (Edward Elgar Publishing Limited, 2015) |
| Author(s) | Joly Y., Dyke S.O.M., Cheung W.A., Rothstein M.A., Pastinen T. |
| Title | Risk of re-identification of epigenetic methylation data: a more nuanced response is needed |
| Reference | (2015) 7:1 Clinical Epigenetics, 1 |
| Author(s) | Joly Y., Dalpé G., So D., Birko S. |
| Title | Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking |
| Reference | (2015) 10:7 PLoS ONE e0129893
|
| http://dx.doi.org/10.1371/journal.pone.0129893 |
| Author(s) | Stein L.D., Knoppers B.M., Campbell P., Getz G., Korbel J.O. |
| Title | Create a cloud commons |
| Reference | (2015) 523:7559 Nature, 149 |
| Author(s) | Dyke S.O.M., Cheung W.A., Joly Y., Ammerpohl O., Lutsik P., Rothstein M.A., Caron M., Busche S., Bourque G., Rönnblom L., Flicek P., Beck S., Hirst M., Stunnenberg H., Siebert R., Walter J., Pastinen T. |
| Title | Epigenome data release: a participant-centered approach to privacy protection |
| Reference | (2015) 16:142 Genome Biology, 1 |
| Author(s) | Granados Moreno P., Joly Y. |
| Title | Intellectual Property Rights in Translation |
| Reference | Principles of Translational Science in Medicine, From Bench to Bedside (Oxford: Elsevier, 2015) |
| Author(s) | Burton P.R., Murtagh M.J., Boyd A., Williams J.B., Dove E.S., Wallace S.E., Tassé A.M., Little J., Chisholm R.L., Gaye A., Hveem K., Brookes A.J., Goodwin P., Fistein J., Bobrow M., Knoppers B.M. |
| Title | Data Save Havens in health research and healthcare |
| Reference | (2015) 31:20 Bioinformatics, 3241 |
| Author(s) | Knoppers B.M., Zawati M.H., Sénécal K. |
| Title | Return of genetic testing results in the era of whole-genome sequencing |
| Reference | (2015) 16:9 Nature Reviews Genetics, 553 |
| http://www.nature.com/nrg/index.html |
| Author(s) | Tyler-Smith C., Yang H., Landweber L.F., Dunham I, Knoppers B.M., Donnelly P., Mardis E.R., Snyder M., McVean F. |
| Title | Where Next for Genetics and Genomics? |
| Reference | (2015) PLoS Biology, 13(7):e1002216. doi:10.1371/journal.pbio.1002216, 1 |
| Author(s) | EL-Bikai R., Tahir M.R., Tremblay J., Joffres M., Šeda O., Šedová L., Awadalla P., Laberge C., Knoppers B.M., Dumas P, Gaudet D., Ste-Marie L.G., Hamet P. |
| Title | Association of age-dependent height and bone mineral density decline with increased arterial stiffness and rate of fractures in hpertensive individuals |
| Reference | (2015) 33:4 Journal of Hypertension, 727 |
| Author(s) | Ali-Khan S.E., Black L., Palmour N., Hallett M.T., Avard D. |
| Title | Socio-ethical issues in personalized medicine: A systematic review of English language health technology assessments of gene expression profiling tests for breast cancer prognosis |
| Reference | (2015) 31:1/2 International Journal of Technology Assessment in Health Care, 36 |
| Author(s) | MacLeod S.M., Knoppert D.C., Stanton-Jean M., Avard D. |
| Title | Pediatric clinical drug trials in low-income countries: key ethical issues |
| Reference | (2015) 17:1 Pediatric Drugs, 83 |
| Author(s) | Lévesque E., Knoppers B.M., Simard J. |
| Title | Ethical challenges and innovations in the dissemination of genomic data: the experience of the PERSPECTIVE project |
| Reference | (2015) 5 Advances in Genomics and Genetics, 283 |
| Author(s) | Birko S., Dove E.S., Ozdemir V. |
| Title | Evaluation of Nine Consensus Indices in Delphi Foresight Research and Their Dependency on Delphi Survey Characteristics: A Simulation Study and Debate on Delphi Design and Interpretation |
| Reference | (2015) PLoS ONE 10(8):e0135162.doit:10.1371/journal.pone.0135162 |
| Author(s) | Knoppers B.M., Chadwick R. |
| Title | The ethics weathervane |
| Reference | (2015) 16:1 BMC Medical Ethics, 1 |
| Author(s) | Fernandez C.V., O'Connell C., Ferguson M., Orr A.C., Robitaille J.M., Knoppers B.M., McMaster C.R. |
| Title | Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study |
| Reference | (2015) 18:5 Public Health Genomics, 299 |
| Author(s) | Sénécal K., Vears D.F., Bertier G., Knoppers B.M., Borry P. |
| Title | Genome-based newborn screening: a conceptual analysis of the best interests of the child standard |
| Reference | (2015) Personalized Medicine, doi:10.2217/PME.15.28, 1 |
| Author(s) | Shuang S., Lévesque E., Sénécal K. |
| Title | Quels changements pour la recherche avec les modifications au Code civil du Québec? |
| Reference | (2015) 74 Revue du Barreau, 95 |
| Author(s) | The 1000 Genomes Project Consortium (Knoppers B.M.) et al |
| Title | A global reference for human genetic variation |
| Reference | (2015) 526"7571 Nature, 68 |
| Author(s) | Rousseau-Nepton I., Okubo M., Grabs R., the FORGE Canada Consortium (Knoppers B.M.), Mitchell J., Polychronakos C., Rodd C. |
| Title | A founder AGL mutation causing glyogen storage disease type 111a in Inuit identified through whole-exome sequencing: a case series |
| Reference | (2015) 187:2 CMAJ, E68 |
| Author(s) | Foulkes W., Knoppers B.M., Turnbull C. |
| Title | Population genetic testing for cancer susceptibility: founder mutations to genomes |
| Reference | (2015) 13:1 Nature Reviews: Clinical Oncology, 41 |
| Author(s) | Andrews P.W., Baker D., Benvinisty N., Miranda B., Bruce K., Brustle O., Choi M., Choi Y.-M., Crook J.M., de Sousa P.A., Dvorak P., Freund C., Firpo M., Furue M.K., Gokhale P., Ha H.-Y., Han E., Haupt S., Healy L., Hei D.J., Hovatta O., Hunt C., Hwang S.-M., Inamdar M.S., Isasi R.M., et al. |
| Title | Points to Consider in the Development of Seed Stocks of Pluripotent Stem Cells for Clinical Applications: International Stem Cell Banking Initiative (ISCBI) |
| Reference | (2015) 10:2 Regenerative Medicine, 1 |
| Author(s) | Bredenoord A.L., Mostert M., Isasi R., Knoppers B.M. |
| Title | Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party |
| Reference | (2015) Future Medicine, doi.10.2217/rme.15.42, 1 |
| Author(s) | Sawyer S.L., Tian L., Kähkönen M., Schwartzentruber J., Kircher M., FORGE Canada Consortium (Knoppers B.M.), Majewski J., Dyment D.A., Innes A.M., Boycott K.M., Moreau L.A., Moilanen J.S., Greenberg R.A. |
| Title | Biallelic Mutations in BCRA1 Cause a New Fanconi Anemia Subtype |
| Reference | (2015) 5:2 Cancer Discovery, 135 |
| Author(s) | Sénécal K., Rahimzadeh V., Knoppers B.M., Fernandez C.V., Avard A., Sinnett D. |
| Title | Statement of Principles on the Return of Research Results and Incidental Findings in Paediatric Research: A Multi-site Consultative Process |
| Reference | (2015) 58:12 Genome, 541 |
| Author(s) | Salman S., Ngueng-Feze S., Joly Y. |
| Title | Divulgation de l’information génétique en assurances |
| Reference | (2015) 93:2 The Canadian Bar Review, 501 |
| Author(s) | Thorogood A., Zawati M.H. |
| Title | International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism) |
| Reference | (2015) 43:4 Journal of Law, Medicine and Ethics, 690 |
| Author(s) | Rothstein M., Knoppers B.M. |
| Title | Introduction: Harmonizing Privacy Laws to Enable International Biobank Research |
| Reference | (2015) 43:4 Journal of Law, Medicine and Ethics, 673 |
| Author(s) | Chen H., Chan B., Joly Y. |
| Title | Privacy and Biobanking in China: A Case of Policy in Transition |
| Reference | (2015) 43:4 Journal of Law, Medicine and Ethics, 726 |
| Author(s) | Shabani M., Dyke S.O.M., Joly Y., Borry P. |
| Title | Controlled access under review: improving the functioning of Data Access Committees |
| Reference | (2015) 13:12 e1002339. doi:10/1371/journal.pbio.1002339 PLOS Biology, 1 |
| Author(s) | Joly Y. |
| Title | Médecine personnalisée: quels sont les véritables enjeux éthiques? |
| Reference | (2015) 2:3 Droit, Santé et Société, 35 |
| Author(s) | Granados Moreno P., Joly Y. |
| Title | Informed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent |
| Reference | (2015) 15:4 Medical Law International, 216 |
| Author(s) | Philippakis A.A., Azzardti D.R., Beltran S., Brookes A.J., Brownstein C.A., Brudno M., Brunner H.A., Buske O.J., Carey K., Doll C., Dumitriu S., Dyke S.O.M., et al |
| Title | The Matchmaker Exchange: A Platform for Rare Disease Gene Discovery |
| Reference | (2015) 36:10 Human Mutation, 915 |
2014 Open
2014 Close
| Author(s) | Ozdemir V., Knoppers B.M. |
| Title | From Government to AG: responding to the challenges of innovation and emerging technologies |
| Reference | Smart Governance for Health and Well-being: The Evidence (Denmark: WHO Regional Office for Europe, 2014) |
| Author(s) | Budin-Ljøsne I., Isaeva J., Knoppers B.M., Tassé A.M., Shen H.-Y., McCarthy M.I., ENGAGE Consortium and Harris J.R. |
| Title | Data Sharing in Large Research Consortia: Experiences and Recommendations from ENGAGE |
| Reference | (2014) 22:3 European Journal of Human Genetics, 317 |
| Author(s) | Knoppers B.M., Avard D., Sénécal K., Zawati M.H., P3G International Paediatrics Platform Members |
| Title | Return of Whole-Genome Sequencing Results in Paediatric Research: A Statement of the P3G International Paediatrics Platform |
| Reference | (2014) 22:1 European Journal of Human Genetics, 3 |
| Author(s) | Zawati M.H., Parry D., Thorogood A., Nguyen M.T., Boycott K., Rosenblatt D., Knoppers B.M. |
| Title | Reporting Results from Whole-Genome and Whole-Exome Sequencing in Clinical Practice: A Proposal for Canada? |
| Reference | (2014) 51:1 Journal of Medical Genetics, 68 |
| Author(s) | Joly Y., Burton H., Knoppers B.M., Ngueng Feze I., Dent T., Pashayan N., Chowdhury S., Foulkes W., Hall A., Hamet P., Kirwan N., Macdonald A., Simard J., Van Hoyweghen V. |
| Title | Life Insurance: Genomic Stratification and Risk Classification |
| Reference | (2014) 22:5 European Journal of Human Genetics, 575 |
| Author(s) | Kleiderman E., Knoppers B.M., Fernandez C.V., Boycott K.M., et al. (including Avard D.) |
| Title | Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases |
| Reference | (2014) 40:10 Journal of Medical Ethics, 691-696 |
| Author(s) | Ogbogu U., Burningham S., Ollenberger A., Calder K., Du L., El Emam K., Hyde-Lay R., Isasi R., Joly Y., Kerr I., Malin B., McDonald M., Penney S., Piat G., Roy D.C., Sugarman J., Vercauteren S., Verhenneman G., West L., Caulfield T. |
| Title | Policy Recommendations for Addressing Privacy Challenges Associated with Cell-Based Research and Interventions |
| Reference | (2014) 15:7 BMC Medical Ethics, (doi:10.1186/1472-6939-15-7), 1 |
| Author(s) | Fernandez C.V., Bouffet E., Malkin D., Jabado N., O'Connell C., Avard D., Knoppers B.M., Ferguson M., Boycott K., Sorensen P.H., Orr A.C., McMaster C. |
| Title | Attitudes of Parents to the Return of Targeted and Incidental Genomic Research Findings in Children |
| Reference | (2014) 16:8 Genetics in Medicine, 633 |
| Author(s) | Knoppers B.M., Özdemir V. |
| Title | The Concept of Humanity and Biogenetics |
| Reference | Humanity Across International Law and Biolaw (Cambridge: Cambridge University Press, 2014) |
| Author(s) | Dove E.S., Knoppers B.M., Zawati M.H. |
| Title | Towards an Ethics Safe Harbor for Global Biomedical Research |
| Reference | (2014) 1:1 Journal of Law and the Biosciences, 3 |
| http://jlb.oxfordjournals.org/content/1/1/3.full.pdf+html |
| Author(s) | Caulfield T., Burningham S., Joly Y., Master Z., Shabani M., Borry P., Becker A., Burgess M., Calder K., Critchley C., Edwards K., Fullerton S.M., Gottweis H., Hyde-Lay R., Illes J., Isasi R., Kato K., Kaye J., Knoppers B.M., Lynch J., McGuire A., Meslin E. [...] Zawati, M.H. |
| Title | A review of the Key Issues Associated with the Commercialization of Biobanks |
| Reference | (2014) 1:1 Journal of Law and the Biosciences, 94 |
| Author(s) | Knoppers B.M., Harris J.R., Budin-Ljøsne I., Dove E.S. |
| Title | A Human Rights Approach to an International Code of Conduct for Genomic and Clinical Data Sharing |
| Reference | (2014) 133:7 Human Genetics, 895 |
| http://link.springer.com/article/10.1007/s00439-014-1432-6 |
| Author(s) | Knoppers B.M. |
| Title | International Ethics Harmonization and the Global Alliance for Genomics and Health |
| Reference | (2014) Genome Medicine, doi:10.11186/gm530 |
| Author(s) | Borry P., Rusu O., Dondorp W., DeWert G., Knoppers B.M., Howard H. |
| Title | Anonymity 2.0. Direct-to-Consumer Genetic Testing and Donor Conception |
| Reference | (2014) 101:3 Fertility and Sterility, 630 |
| Author(s) | Brownstein C.A., Beggs A.H., Homer N., [...] Knoppers B.M., et al |
| Title | An International Effort Towards Developing Standards for Best Practices in Analysis, Interpretation and Reporting of Clinical Genome Sequencing Results in the CLARITY Challenge |
| Reference | (2014) 15:3 Genome Biology, 1 |
| Author(s) | Knoppers B.M., Sénécal K., Borry P., Avard D. |
| Title | Whole Genome Sequencing in Newborn Screening Programmes? |
| Reference | (2014) 6:229 Science Translational Medicine, 1 |
| Author(s) | Lévesque M., Kim J.R., Isasi R., Knoppers B.M., Plomer A., Joly Y. |
| Title | Stem Cell Research Funding Policies and Dynamic Innovation: A Survey of Open Access and Commercialization Requirements |
| Reference | (2014) 10:4 Stem Cell Reviews and Reports, 455 |
| Author(s) | McGuire A.L., Knoppers B.M., Zawati M.H., Clayton E.W. |
| Title | Can I be Sued for that? Liability Risk and the Disclosure of Clinically Significant Genetic Research Findings |
| Reference | (2014) 24:5 Genome Research, 719 |
| Author(s) | Isasi R., Andrews P.W., Baltz J.M., Bredenoord A.L., Burton P., Chiu I.-M., Hull S.C., Jung J.-W., Kurtz A., Lomax G., Ludwig T., McDonald M., Morris C., Ng H.H., Rooke H., Sharma A., Stacey G.N., Williams C., Zeng F., Knoppers B.M. |
| Title | Identifiability and Privacy in Pluripotent Stem Cell Research |
| Reference | (2014) 14:4 Stem Cell Cell, 427 |
| Author(s) | Ozdemir V., Endrenyi L., Aynacioglu S., Bragazzi N.L., Dandara C., Dove E.S., Ferguson L.R., Geraci C.J., Hafen E., Kesim B.E., Kolker E., Lee E.J., Llerena A., Nacak M., Shimoda K., Someya T., Srivastava S., Tomlinson B., Vayena E., Warnich L., Yasar U. |
| Title | Bernard Lerer: Recipient of the 2014 Inaugural Werner Kalow Responsible Innovation Prize in Global Omics and Personalized Medicine (Pacific Rim Association for Clinical Pharmacogenetics). |
| Reference | (2014) 18:4 OMICS A Journal of Intergrative Biology, 211 |
| http://online.liebertpub.com/doi/abs/10.1089/omi.2014.0029 |
| Author(s) | Knoppers B.M. |
| Title | Introduction: From the Right to Know to the Right Not to Know |
| Reference | (2014) 42:1 Journal of Law, Medicine and Ethics, 6 |
| Author(s) | Allen C., Sénécal K., Avard D. |
| Title | Defining the Scope of Public Engagement: Examining the "Right Not to Know" in Public Health Genomics |
| Reference | (2014) 42:1 Journal of Law, Medicine and Ethics, 11 |
| Author(s) | Dove E.S., Özdemir V. |
| Title | Glocal Bioethics: When International IRB Collaboration Confronts Local Politics |
| Reference | (2014) 14:5 American Journal of Bioethics, 20 |
| http://www.tandfonline.com/doi/full/10.1080/15265161.2014.892178#.U2WMe_ldXw0 |
| Author(s) | Dove E.S., Özdemir V. |
| Title | The Epiknowledge of Socially Responsible Innovation |
| Reference | (2014) 15:5 EMBO Reports, 462 |
| http://embor.embopress.org/content/15/5/462 |
| Author(s) | Thorogood A., Zawati M.H., Knoppers B.M. |
| Title | Point-of-Care Genetic Tests for Infectious Disease: Legal Considerations |
| Reference | (2014) 12:1 Current Pharmacogenomics and Personalized Medicine, 43 |
| Author(s) | Mallette A., Tassé A.M. |
| Title | P3G Generic Information Pamphlet and Consent Form |
| Reference | (2014) Public Population Project in Genomics and Society (P3G), 1 |
| Author(s) | Doiron D., Burton P., Marcon Y., Gaye A., Wolffenbuttel B.H.R., Perola M., Stolk R.P., Foco L., Minelli C., Waldenberger M., Holle R., Kvaloy K., Hillege H.L., Tassé A.M., Ferretti V., Fortier I. |
| Title | Data Harmonization and Federated Analysis of Population-Based Studies: the BioSHaRE Project |
| Reference | (2013) 10:12 Emerging Themes in Epidemiology, 1 |
| Author(s) | Joly Y., Tonin P.N. |
| Title | Social, Ethical and Legal Considerations Raised by the Discovery and Patenting of the BRCA1 and BRCA2 genes |
| Reference | (2014) 33:2 New Genetics and Society, 167 |
| Author(s) | Beaulieu C.L., Majewski J., Schwartzentruber J., Samuels M.E., Fernandez B.A., Bernier F.P., Brudno M., Knoppers B.M., Marcadier J., Dyment D., Adam S., Bulman D.E., Jones S.J.M., Avard D., Nguyen M.T., Rousseau F., Marshall C., Wintle R.F., Shen Y., Scherer S.W., FORGE Canada Consortium, et al |
| Title | FORGE Canada Consortium: Outcomes of a 2-Year National Rare-Disease Gene-Discovery Project |
| Reference | (2014) 94:6 The American Journal of Human Genetics, 809 |
| Author(s) | Milius D., Dove E.S., Chalmers D., Dyke S.O.M., Kato K., Nicolás P., Ouellette B.F.F., Ozenberger B., Rodriguez L.L., Zeps N., Joly Y. |
| Title | The International Cancer Genome Consortium’s Evolving Data-Protection Policies |
| Reference | (2014) 32:6 Nature Biotechnology, 519 |
| http://www.nature.com/nbt/journal/v32/n6/full/nbt.2926.html |
| Author(s) | Knoppers B.M., Zawati M.H., Cohen E. |
| Title | Special Issue - From Biobanks to the Clinic |
| Reference | (2014) 3:2 Applied & Translational Genomics, 21 |
| Author(s) | Ouellette S.,Tassé A.M. |
| Title | P3G - 10 years of toolbuilding: From the population biobank to the clinic |
| Reference | (2014) 3:2 Applied & Translational Genomics, 36 |
| Author(s) | Ngueng Feze I., Joly Y. |
| Title | Can't Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers |
| Reference | (2014) 12:1 Current Pharmacogenomics and Personalized Medicine, 56 |
| Author(s) | Zawati M.H. |
| Title | There will be sharing: Population Biobanks, the duty to inform and the limitations of the individualistic conception of autonomy |
| Reference | (2014) 21 Health Law Journal, 97 |
| Author(s) | Zawati M.H., Thorogood A. |
| Title | The physician who knew too much: A comment on Watters v White |
| Reference | (2014) 21 Health Law Journal, 1 |
| Author(s) | Isasi R. |
| Title | Stem Cell Research and Banking: Towards Policy on Disclosing Research Results and Incidental Findings |
| Reference | Stem Cell Banking (London: Humana Press, 2014) |
| Author(s) | Kosseim P., Dove E.S., Baggaley C., Meslin E.M., Cate F.H., Kaye J., Harris J.R., Knoppers B.M. |
| Title | Building a Data Sharing Model for Global Genomic Research |
| Reference | (2014) 15:8 Genome Biology, 1 |
| http://genomebiology.com/2014/15/8/430 |
| Author(s) | Joly Y., Saulnier K.M., Osien G., Knoppers B.M. |
| Title | The ethical framing of personalized medicine |
| Reference | (2014) 14:5 Current Opinion in Allergy and Clinical Immunology, 404 |
| Author(s) | Dove E.S., Townend D., Knoppers B.M. |
| Title | Data Protection and Consent to Biomedical Research: A Step Forward? |
| Reference | (2014) 384 The Lancet 855. |
| http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61488-4/fulltext# |
| Author(s) | Zawati M.H. |
| Title | Liability and the Legal Duty to Inform in Research |
| Reference | Routledge Handbook of Medical Law and Ethics (London: Routledge, 2014) |
| Author(s) | Nicholls S.G., Joly Y., Moher E., Little J. |
| Title | Genetic discrimination and insurance in Canada: Where are we now? |
| Reference | (2014) 30:3 On the Risk, 46 |
| Author(s) | Henderson G.E., Wolf S.M., Kuczynski K.J., Joffe S., Sharp R.R., Williams Parsons D., Knoppers B.M., Yu J.-H., Appelbaum P.S. |
| Title | The challenge of informed consent and return of results in translational genomics: Empirical analysis and recommendations |
| Reference | (2014) 42:3 Journal of Law, Medicine & Ethics, 344 |
| Author(s) | Lévesque E., Knoppers B.M. |
| Title | Management Strategies for Ethics in International Research |
| Reference | (2014) 2:4 Current Genetic Medicine Reports, 255 |
| http://link.springer.com |
| Author(s) | Gaye A., Marcon Y., Isaeva J., LaFlamme P., Turner A., Jones E.M., Minion J., Boyd A.W., Newby C.J., Nuotio M.-L., Wilson R., Butters O., Murtagh B., Demir I., Doiron D., Giepmans L., Wallace S.E., Budin-Ljøsne I., Schmidt C.O., Boffetta P., Boniol M., Bota M., Carter K.W., deLkerk N., et al |
| Title | DataSHIELD: taking the analysis to the data, not the data to the analysis |
| Reference | (2014) 43:6 International Journal of Epidemiology, 1929 |
| http://ije.oxfordjournals.org |
| Author(s) | Dove E.S. |
| Title | Review - Ethics, Law and Society: Volume V |
| Reference | (2014) Medical Law International 14(1-2): 100-105. |
| http://mli.sagepub.com/content/14/1-2/100.full.pdf+html |
| Author(s) | Ragoussis V., Ngueng Feze I., Joly Y. |
| Title | Sharing Genetic Information Online: An Exploration of GINA's 2.0 Frontier |
| Reference | (2014) 14:11 The American Journal of Bioethics, 53 |
| http://www.tandfonline.com/loi/uajb20#.VFEiS03D8ps |
| Author(s) | Ngueng Feze I., Prystajecky N., Cook C., Knoppers B.M., Özdemir V., Dunn G., Isaac-Renton J., Joly Y. |
| Title | The regulation of water quality assessment biotechnologies: Is Canada ready to surf the next wave? |
| Reference | (2014) 26:3 Journal of Environmental Law and Practice, 201 |
| Author(s) | Zawati MH, Parry D, Knoppers BM |
| Title | The best interests of the child and the return of results in genetic research: international comparative perspectives |
| Reference | (2014) 15:72 BMC Medical Ethics, 1 |
| http://www.biomedcentral.com/1472-6939/15/72 |
| Author(s) | Zawati MH |
| Title | Éléments de la responsabilité civile du conseiller en génétique au Québec |
| Reference | in Anne Marie Savard & Mélanie Bourrassa Forcier, Droit et politiques de la santé, Chapter 9 (Quebec: LexisNexis Canada, 2014), 351. |
| Author(s) | Rahimzadeh V., Joly Y., Knoppers B.M. |
| Title | Introduction |
| Reference | Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014) |
| Author(s) | Joly Y., Knoppers B.M. |
| Title | Routledge Handbook of Medical Law and Ethics |
| Reference | Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014) |
| Author(s) | Thorogood A., Knoppers B.M. |
| Title | The ethical and legal duties of physicians in clinical genetics and genomics |
| Reference | Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014) |
| Author(s) | Dalpé G., Joly Y. |
| Title | Towards precision medicine: the legal and ethical challenges of pharmacogenomics |
| Reference | Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014) |
| https://www.routledgehandbooks.com/doi/10.4324/9780203796184.ch19 |
| Author(s) | Beak C., Isasi R. |
| Title | Regenerative Medicine: Socio-ethical challenges and regulatory approaches |
| Reference | Routledge Handbook of Medical Law and Ethics (Oxon: Routledge, 2014) |
| Author(s) | Knoppers B.M. |
| Title | Framework for responsible sharing of genomic and health-related data |
| Reference | (2014) 8:1 The HUGO Journal, 1 |
| Author(s) | Strom B.L., Buyse M., Hughes J., Knoppers B.M. |
| Title | Data Sharing, Year 1 – Access to Data from Industry-Sponsored Clinical Trials |
| Reference | (2014) The New England Journal of Medicine, doi: 10.1056/NEJMp1411794, 1 |
| Author(s) | Boccia S., McKee M., Adany R., Boffetta P., Burton H., Cambon-Thomsen A., Cornel M.C., Gray M., Jani A., Knoppers B.M., Khoury M.J., Meslin E.M., Van Duijn C.M., Villari P., Zimmern R., Cesario A., Puggina A., Colotto M., Ricciardi W. |
| Title | Beyond public health genomics: proposals from an international working group |
| Reference | (2014) European Journal of Public Health, doi:10.1093/eurpub/cku142, 1 |
| Author(s) | Dalpé G., Joly Y. |
| Title | Opportunities and Challenges Provided by Cloud Repositories for Bioinformatics-Enabled Drug Discovery |
| Reference | (2014) 75:6 Drug Development Research, 393 |
| http://onlinelibrary.wiley.com/journal/10.1002/(ISSN)1098-2299 |
| Author(s) | Joly Y., Knoppers B.M. |
| Title | Médecine personnalisée : équité et accès |
| Reference | (2014) 30:2 Medecine/sciences, 27 |
| Author(s) | Graham C.E., Molster C., Baynam G.S., Bushby K., Hansson M., Kole A., Mora M., Monaco L., Bellgard M., Carpentieri D., Posada M., Riess O., Rubinstein Y.R., Schaefer F., Taruscio D., Terry S.F., Zatloukal K., Knoppers B., Lochmuller H., Dawkins H.J.S. |
| Title | Current trends in biobanking for rare diseases: a review |
| Reference | (2014) 2 Journal of Biorepository Science for Applied Medicine, 49 |
| Author(s) | MacLeod S.M., Knoppert D.C., Stanton-Jean M., Avard D. |
| Title | Pediatric Clinical Drug Trials in Low-Income Countries: Key Ethical Issues |
| Reference | (2014) Pediatric Drugs, doi 10.1007/s40272-014-0103-3, 1 |
| Author(s) | Zawati M.H., Cohen E, Parry D, Avard D and Syncox D |
| Title | Ethics Education for Clinician-Researchers in Genetics: The Combined Approach |
| Reference | (2014) Applied and Translational Genomics Journal,doi:10.1016/j.atg.2014.12.001 |
| Author(s) | Dove E.S., Joly Y., Tassé A.M., P3G International Steering Committee, ICGC Ethics and Policy Committee, Knoppers B.M. |
| Title | What Are Some of the ELSI Challenges of International Collaborations Involving Biobanks, Global Sample Collection, and Genomic Data Sharing and How Should They Be Addressed? |
| Reference | (2014) 12:6 Biopreservation and Biobanking, 363 |
| Author(s) | Knoppers B.M. |
| Title | Does policy grow on trees? |
| Reference | (2014)15(1):87 BMC Medical Ethics, doi:10.1186/1472-6939-15-87, 1 |
| Author(s) | Roy D.C., Alarco A.M., Isasi R. |
| Title | CellCAN: A Unique Enabler of Regenerative Medicine and Cell Therapy in Canada |
| Reference | (2014) 23:S1 Stem Cells and Development, 24 |
| Author(s) | Thorogood A., Joly Y., Knoppers B.M., Nilsson T., Metrakos P., Lazaris A., Salman A. |
| Title | An Implementation Framework for the Feedback of Individual Research Results and Incidental Findings in Research |
| Reference | (2014) 15(1):88 BMC Medical Ethics, doi:10.1186/1472-6939-15-88, 1 |
| Author(s) | Joly Y. |
| Title | Au gré des vents et marées, l’évolution de l’éthique de la recherche au Québec |
| Reference | (2014) 53 Revue générale de droit médical, 31 |
| Author(s) | Joly Y., Kim R., Salman S., Ngueng Feze I. |
| Title | The use of Genetic Information Outside of the Therapeutic Health Relationship: An International Perspective |
| Reference | Genetic Discrimination Transatlantic Perspectives on the Case for a European Level Legal Response (Oxford: Routledge, 2014) |
| Author(s) | Zawati, MH., Knoppers BM, Thorogood A |
| Title | Population Biobanking and International Collaboration |
| Reference | (2014) 81 Pathobiology, 276 |
| Author(s) | Briceño Moraia L., Kaye J., Tassé A.M., Soini S., Hoppe N., Wallace S., Knoppers B.M., Øien M. |
| Title | A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and in the United Kingdom |
| Reference | (2014) 14:4 Medical Law International, 187 |
| Author(s) | Rahimzadeh V., Bartlett G.B. |
| Title | Genetics and Primary Care: Where Are We Headed? |
| Reference | (2014) 12:238 Journal of Translational Medicine, 1 |
| Author(s) | McDonell L.M., Warman Chardon J., Schwartzentruber J., Foster D., Beaulieu C.L., FORGE Canada Consortium (Knoppers B.M.), Majewski J., Bulman D.E., Boycott K.M. |
| Title | The utility of exome sequencing for genetic diagnosis in a familial microcephaly epilepsy syndrome |
| Reference | (2014) 14:22 BMC Neurology, 1 |
2013 Open
2013 Close
| Author(s) | Ozdemir V., Joly Y., Kirby E., Avard D., Knoppers B.M. |
| Title | Beyond ELSIs - Where to From Here? From 'Regulating' to Anticipating and Shaping the Innovation Trajectory in Personalized Medicine |
| Reference | Pharmacogenomics: Challenges and Opportunities in Therapeutic Implementation (Amsterdam: Elsevier, 2013) |
| http://www.sciencedirect.com/science/book/9780123919182 |
| Author(s) | McClellan K.A, Avard D., Simard J., Knoppers B.M. |
| Title | Personalized Medicine and Access to Health Care: Potential for Inequitable Access? |
| Reference | (2013) 21:2 European Journal of Human Genetics, 143 |
| http://www.ncbi.nlm.nih.gov/pubmed/22781088 |
| Author(s) | Knoppers B.M., Deschênes M., Zawati M.H., Tassé A.M. |
| Title | Population Studies: Return of Research Results and Incidental Findings Policy Statement |
| Reference | (2013) 21:3 European Journal of Human Genetics, 245 |
| Author(s) | Dove E.S., Ozdemir V. |
| Title | 'Regular Science' is Inherently Political |
| Reference | (2013) 14:2 EMBO Reports, 113 |
| http://www.ncbi.nlm.nih.gov/pubmed/23258262 |
| Author(s) | Ozdemir V. |
| Title | OMICS 2.0: A Practice Turn for 21st Century Science and Society |
| Reference | (2013) 17:1 OMICS: A Journal of Integrative Biology, 1 |
| http://online.liebertpub.com/doi/abs/10.1089/omi.2012.0111 |
| Author(s) | Knoppers B.M., Rioux A. and Zawati, M.H. |
| Title | Pediatric Research ‘Personalized’? International Perspectives on the Return of Results |
| Reference | (2013)10:1 Personalized Medicine, 89 |
| Author(s) | Fernandez C.V., Strahlendor C., Avard D., Knoppers B.M., O'Connell C., Bouffet E., Malkin D., Jabado N., Boycott K., Sorensen P.H. |
| Title | Attitudes of Canadian Researchers Toward the Return to Participants of Incidental and Targeted Genomic Findings Obtained in a Pediatric Research Setting |
| Reference | (2013) 15:7 Genetics Medicine, 558 |
| Author(s) | Dove E.S., Avard D., Black L., Knoppers B.M. |
| Title | Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices |
| Reference | (2013) 14:1 BMC Medical Ethics, 1 |
| Author(s) | Wall Warner A., Bienfait K.L., Bledsoe M., Burckart G., Flamion B., Knoppers B.M., Nelsen A.J., Rudman A., Sieffert N.J., Uyama Y. |
| Title | Improving Clinical Trial Sampling for Future Research - An International Approach: Outcomes and Next Steps from the DIA Future Use Sampling Workshop 2011 |
| Reference | (2013) 14:1 Pharmacogenomics, 103 |
| Author(s) | Sénécal K., Lévesque E., Fernandez C., Tassé A.M., Zawati M.H., Knoppers B.M., Avard D. |
| Title | RMGA Statement of Principles on the Return of Research Results and Incidental Findings |
| Reference | (Montréal, RMGA, 2013) |
| http://www.rmga.qc.ca/en/documents/RMGAStatement_Principles_English_May272013_000.pdf |
| Author(s) | Ozdemir V., Borda-Rodriguez A., Dove E.S., Ferguson L.R., Huzair F., Manolopoulos V.G., Masellis M., Milius D., Warnich L., Srivastava S. |
| Title | Public Health Pharmacogenomics and the Design Principles for Global Public Goods - Moving Genomics to Responsible Innovation |
| Reference | (2013) 11:1 Current Pharmacogenomics and Personalized Medicine, 1 |
| http://www.ncbi.nlm.nih.gov/pubmed/23531886 |
| Author(s) | Joly Y., Ngueng Feze I., Simard J. |
| Title | Genetic Discrmination and Life Insurance: A Systematic Review of the Evidence |
| Reference | (2013) 11:25 BMC Medicine, 1 |
| Author(s) | McClellan K.A., Kleiderman E., Black L., Bouchard K., et al. (including Knoppers B.M. and Avard D.) |
| Title | Exploring Resources for Intrafamilial Communication of Cancer Genetic Risk: We Still Need to Talk |
| Reference | (2013) 21:9 European Journal of Human Genetics, 903-910 |
| Author(s) | Black L., McClellan K., Avard D., Knoppers B.M. |
| Title | Intrafamilial Disclosure of Risk for Hereditary Breast Cancer: Points to Consider |
| Reference | (2013) 4:2 Community Genetics, 203 |
| Author(s) | Knoppers B.M. |
| Title | Privacy, Confidentiality, and Health Research |
| Reference | (2013) 42:1 International Journal of Epidemiology, 359 |
| Author(s) | Awadalla P., Boileau C., Payette Y., Idaghdour Y., Goulet J.-P., Knoppers B.M., et al |
| Title | Cohort Profile of the CARTaGENE Study: Quebec's Population-Based Biobank for Public Health and Personalized Genomics |
| Reference | (2013) 42:5 International Journal of Epidemiology, 1285 |
| Author(s) | Hayeems R.Z., Miller F.A., Bomard Y., Avard D., Carroll J., Wilson B., Little J., Chakraborty P., Bytautas J., Giguere Y., Allanson J., Axler R. |
| Title | Expectations and Values About Expanded Newborn Screening: A Public Engagement Study |
| Reference | (2013) Health Expectations, 1 |
| Author(s) | Dove E.S., Ozdemir V. |
| Title | All the Post-Genomic World is a Stage: The Actors and Narrators Required for Translating Pharmacogenomics into Public Health |
| Reference | (2013) 10:3 Personalized Medicine, 213 |
| http://www.futuremedicine.com/toc/pme/10/3 |
| Author(s) | Black L., Batist G., Avard D., Rousseau C., Diaz Z., Knoppers B.M. |
| Title | Physician Recruitment of Patients to Non-therapeutic Oncology Clinical Trials: Ethics Revisited |
| Reference | (2013) 4 Frontiers in Pharmacology, doi: 10.3389/fphar.2013.00025, 1 |
| Author(s) | Knoppers B.M., Chisholm R.L., Kaye J., Cox D., Thorogood A., Burton P., Brookes A.J., Fortier I., Goodwin P., Harris J.R., Hveem K., Kent A., Little J., Riegman P.H.J., Ripatti S., Stolk R.P. |
| Title | A P3G Generic Access Agreement for Population Genomic Studies |
| Reference | (2013) 31:5 Nature Biotechnology, 384 |
| Author(s) | van El C.G., Cornel M.C., Borry P., Hastings R.J., Fellmann F., Hodgson S.V., Howard H.C., Cambon-Thomsen A., Knoppers B.M., Meijers-Heijboer H., Scheffer H., Tranebjaerg L., Dondorp W., de Wert G.M.W.R. |
| Title | Whole-genome sequencing in health care |
| Reference | (2013) 21:6 European Journal of Human Genetics, 580 |
| Author(s) | Knoppers B.M., Thorogood A., Chadwick R. |
| Title | The Human Genome Organisation: Towards Next-generation Ethics |
| Reference | (2013) 5:4 Genome Medicine, 1 |
| Author(s) | Black L., Avard D., Zawati M.H., Knoppers B.M., Hébert J., Sauvageau G. |
| Title | Funding Considerations for the Disclosure of Genetic Incidental Findings in Biobank Research |
| Reference | (2013) 84:5 Clinical Genetics, 397 |
| Author(s) | Budin-Ljøsen I., Soye K.J., Tassé A.M., Knoppers B.M., Harris J.R. |
| Title | Genotype-driven Recruitment: A Strategy whose Time has Come? |
| Reference | (2013) 6:19 BMC Medical Genomics, 1 |
| Author(s) | Zawati M.H. |
| Title | Biobanques destinées à la recherche: introduction et défis majeurs |
| Reference | dans Actes: 6e edition, Journées d’étude des comités d’éthique de la recherche et de leurs partenaires (Québec, La Direction des communications du ministère de la Santé et des Services sociaux, 2013), 20-25. |
| http://ethique.msss.gouv.qc.ca/fileadmin/documents/JECER/JECER_6/Actes_6/JECER_2012_Actes.pdf |
| Author(s) | Joly Y., Knoppers B.M. |
| Title | Ethics and Genetics |
| Reference | Brenner's Encyclopedia of Genetics (Oxford: Elsevier, 2013) |
| Author(s) | Ozdemir V., Badr K.F., Dove E.S., Endrenyi L., Geraci C.J., Hotez P.J., Milius D., Neves-Pereira M., Pang T., Rotimi C.N., Sabra R., Sarkissian C.N., Srivastava S., Tims H., Zgheib N.K., Kickbusch I. |
| Title | Crowd-Funded Micro-Grants for Genomics and ‘Big Data’: An Actionable Idea Connecting Small (Artisan) Science, Infrastructure Science and Citizen Philanthropy |
| Reference | (2013) 17:4 OMICS: A Journal of Integrative Biology, 161 |
| http://www.ncbi.nlm.nih.gov/pubmed/23574338 |
| Author(s) | Caulfield T., Chandrasekharan S., Joly Y., Cook-Deegan R. |
| Title | Harm, hype and evidence: ELSI research and policy guidance |
| Reference | (2013) 5:3 Genome Medicine, 1 |
| Author(s) | Sénécal K., Lévesque E., Fernandez C., Tassé A.M., Zawati M.H., Knoppers B.M., Avard D. |
| Title | Énoncé de principes du RMGA sur la communication des résultats de recherche et des découvertes fortuites |
| Reference | |
| http://www.rmga.qc.ca/fr/documents/EnonceduRMGA_versionfr_27mai2013.pdf |
| Author(s) | Knoppers B.M. |
| Title | From Tissues to Genomes |
| Reference | (2013) 3:8 G3 Genes, Genomes, Genetics, 1203 |
| Author(s) | Burke W., Matheny Antommaria A.H., Bennett R., Botkin J., Clayton E.W., Henderson G.E., Holm I.A., Jarvik G.P., Khoury M.J., Knoppers B.M., Press N.A., Ross L.F., Rothstein M.A., Saal H., Uhlmann W.R., Wilfond B., Wolf S.M., Zimmern B. |
| Title | Recommendations for Returning Genomic Incidental Findings? We Need to Talk! |
| Reference | (2013)Genetics in Medicine, doi: 10.1038/gim.2013.113 (advance online publication) |
| Author(s) | Mascalzoni D., Knoppers B.M., Aymé S., Macilotti M., Dawkins H., Woods S., Hansson M.G. |
| Title | Rare Diseases and Now Rare Data? |
| Reference | (2013) 14:6 Nature Reviews. Genetics, 372 |
| Author(s) | Allen C., Joly Y., Granados Moreno P. |
| Title | Data Sharing, Biobanks and Informed Consent: A Research Paradox? |
| Reference | (2013) 7:1 McGill Journal of Law and Health, 85 |
| Author(s) | Knoppers BM, Dove ES, Zawati MH |
| Title | Demystifying Biobanks |
| Reference | (2013) 43:5 Hastings Center Report, 4 |
| Author(s) | Milius D. |
| Title | Personal Health Information and R&D Pharma: What are the Risks? |
| Reference | (2013) News of Course, 12 |
| Author(s) | Cook C., Prystajecky N., Ngueng Feze I., Joly Y., Dunn G., Kirby E., Ozdemir V., Isaac-Renton J. |
| Title | A comparison of the regulatory frameworks governing microbial testing of drinking water in three Canadian provinces |
| Reference | (2013) 38:3 Canadian Water Resources Journal, 185 |
| Author(s) | Dove E.S., Black L., Avard D., Knoppers B.M. |
| Title | Charting the Privacy Landscape in Canadian Paediatric Biobanks |
| Reference | (2013) 20 Health Law Journal, 1 |
| Author(s) | Bartlett G., Avard D., Knoppers B.M. |
| Title | A new twist on an old problem: primary care physicians and results from direct-to-consumer genetic testing |
| Reference | (2013) 18:8 Personalized Medicine, 827 |
| Author(s) | Caulfield T., Evans J., McGuire A., McCabe C., Bubela T., Cook-Deegan R., Fishman J., Hogarth S., Miller F.A., Ravitsky V., Biesecker B., Borry P., Cho M.K., Carroll J.C., Etchegary H., Joly Y., Kato K., Soo-Jin Lee S., Rothenberg K., Sankar P., et al |
| Title | Reflections on the Cost of "Low-Cost" Whole Genome Sequencing: Framing the Health Policy Debate |
| Reference | (2013) 11:11 PLOS Biology, 1 |
| Author(s) | Kirby E., Zawati M.H., Knoppers B.M. |
| Title | Electronic Consent to Health Research in Canada |
| Reference | (2013) 91:2 Canadian Bar Review, 417 |
| Author(s) | Knoppers B.M. |
| Title | Genomics: from persons to populations and back again |
| Reference | (2013) 56:10 Genome, 537 |
| Author(s) | Dove E.S., Knoppers B.M., Zawati M.H. |
| Title | An Ethics Safe Harbor for International Genomics Research? |
| Reference | (2013) 5:11 Genome Medicine, 99 |
| http://genomemedicine.com/content/5/11/99/ |
| Author(s) | Arbuckle T.E., Fraser W.D., Fisher M., Davis K., Liang C.L., Lupien N., Bastien S., Velez M.P., et al, Avard D., et al. |
| Title | Cohort Profile: The Maternal-Infant Research on Environmental Chemicals Research Platform |
| Reference | (2013) 27:4 Journal of Paediatric & Perinatal Epidemiology, 415 |
| Author(s) | Dove E.S. |
| Title | Review - The Connected Self: the Ethics and Governance of the Genetic Individual |
| Reference | (2013) 32:4 New Genetics and Society, 448 |
| http://www.tandfonline.com/doi/abs/10.1080/14636778.2013.850021#.Uqw8cPRDvw0 |
| Author(s) | Sénécal K., Stanton-Jean M., Avard D. |
| Title | Favoriser l’implication du public pour accroître la légitimité des prises de décision en matière de politiques de santé? |
| Reference | (2013) 24:4 Journal international de bioéthique, 159 |
| Author(s) | So D., Joly Y. |
| Title | Commercial Opportunities and Ethical Pitfalls in Personalized Medicine: A Myriad of Reasons to Revisit the Myriad Genetics Saga |
| Reference | (2013) 11:2 Current Pharmacogenomics and Personalized Medicine, 98 |
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3715893/ |
| Author(s) | Dove E.S. |
| Title | Questioning the Governance of Pharmacogenomics and Personalized Medicine for Global Health |
| Reference | (2013) 11:4 Current Pharmacogenomics and Personalized Medicine, 253 |
| Author(s) | So D., Joly Y., Knoppers B.M. |
| Title | Clinical Trial Transparency and Orphan Drug Development: Recent Trends in Data Sharing by the Pharmaceutical Industry |
| Reference | (2014) 16:6 Public Health Genomics, 322 |
| Author(s) | Dove E.S. |
| Title | Back to Blood: The Sociopolitics and Law of Compulsory DNA Testing of Refugees |
| Reference | (2013) 8:2 UMass Law Review, 466 |
| Author(s) | Isasi R., Dalpe G., Knoppers B.M. |
| Title | Fostering Public Cord Blood Banking and Research in Canada |
| Reference | (2013) 22(S1) Stem Cells and Development, 29 |
| Author(s) | Lomax G.P., Chandros Hull S., Lowenthal J., Rao M., Isasi R. |
| Title | The DISCUSS Project: induced pluripotent stem cell lines from previously collected research biospecimens and informed consent: points to consider |
| Reference | (2013) 2:10 Stem Cells Translational Medicine, 727 |
| Author(s) | Lomax G.P., Chandros Hull S., Lowenthal J., Rao M., Isasi R. |
| Title | The DISCUSS Project: Induced Pluripotent Stem Cell Lines from Previously Collected Research Biospecimens and Informed Consent: Points to Consider |
| Reference | (2013) 2:10 Stem Cells Translational Medicine, 727 |
| Author(s) | Knoppers B.M., Chisholm R.L., Kaye J., Cox D., Thorogood A., Burton P., Brookes A.J., Fortier I., Goodwin P., Harris J.R., Hveem K., Kent A., Little J., Riegman P.H., Ripatti S., Stolk R.P. |
| Title | Supplement – Sample Generic Access Agreement |
| Reference | (2013) 31:5 Nature Biotechnology, 1 |
| Author(s) | Tassé A.M. |
| Title | From ICH to IBH in Biobanking? A Legal Perspective on Harmonization, Standardization and Unification |
| Reference | (2013) 7:1 Studies in Ethics, Law, and Technology, 1 |
| Author(s) | Mallette A., Tassé A.M. |
| Title | P3G Model Framework for Biobank Access Policy: Core Elements |
| Reference | (2013) Public Population Project in Genomics and Society (P3G), 1 |
| Author(s) | Mallette A., Tassé A.M., Knoppers B.M. |
| Title | P3G Model Framework for Biobank Governance |
| Reference | (2013) Public Population Project in Genomics and Society (P3G), 1 |
| Author(s) | Joly Y., Avard D. |
| Title | Pharmacogenomics: Ethical, Legal and Social Issues |
| Reference | Handbook of Personalized Medicine: Advances in Nanotechnology, Drug Delivery and Therapy (Singapore: Pan Stanford Publishing, 2013) |
| Author(s) | Lévesque E. |
| Title | L'élaboration et la rédaction du cadre de gestion d'une biobanque: plus d'une façon de satisfaire aux exigences éthiques |
| Reference | dans Actes: 6e edition, Journées d’étude des comités d’éthique de la recherche et de leurs partenaires (Québec, La Direction des communications du ministère de la Santé et des Services sociaux, 2013), 83-86. |
| http://ethique.msss.gouv.qc.ca/fileadmin/documents/JECER/JECER_6/Actes_6/JECER_2012_Actes.pdf |
| Author(s) | Isasi R., Dalpé G., Knoppers, B.M. |
| Title | Fostering Public Cord Blood Banking and Research in Canada |
| Reference | (2013) 22:S1 Stem Cells and Development 29–34
|
| http://online.liebertpub.com/doi/abs/10.1089/scd.2013.0381 |
2012 Open
2012 Close
| Author(s) | Knoppers B.M., Zawati M.H. |
| Title | Biobanks |
| Reference | Encyclopedia of Applied Ethics (San Diego: Academic Press, 2012) |
| Author(s) | Ozdemir V., Joly, Y., Dove, E.S., Karalis, A., Avard, D., Knoppers, B.M. |
| Title | Are we Asking the Right Ethics Questions on Drug Shortages? Suggestions for a Global and Anticipatory Ethics Framework. |
| Reference | (2012) 12:1 American Journal of Bioethics, 13 |
| Author(s) | Reist C., Wu J.C., Lilja Y., Mukherjee J., Gripeos D., Constantinescu C., Raggi M.A., Mercolini L., Ozdemir V. |
| Title | Ketoconazole-Associated Preferential Increase in Dopamine D2 Receptor Occupancy in Striatum Compared to Pituitary In Vivo: Role for Drug Transporters? |
| Reference | (2012) 32:1 J. Clin. Psychopharmacology, 110. |
| Author(s) | Zawati M.H., Knoppers B.M. |
| Title | International Normative Perspectives on the Return of Individual Research Results and Incidental Findings in Genomic Biobanks |
| Reference | (2012) 14:4 Genetics in Medicine, 484 |
| Author(s) | Ozdemir V., Fisher E, Dove E.S., Burton H., Wright G.E.B., Masellis M., Warnich L. |
| Title | End of the Beginning and Public Health Pharmacogenomics: Knowledge in ‘Mode 2’ and P5 Medicine |
| Reference | (2012) 10:1 Current Pharmacogenomics and Personalized Medicine, 1-6 |
| http://www.benthamdirect.org/pages/content.php?CPPM/2012/00000010/00000001/001AF.SGM |
| Author(s) | Knoppers B.M., Zawati M.H., Kirby E.S. |
| Title | Sampling Populations of Humans Across the World: ELSI Issues |
| Reference | (2012) 13:1 The Annual Review of Genomics and Human Genetics, 395 |
| Author(s) | Wolf S.M., Crock B.N., Van Ness B., et al. |
| Title | Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets |
| Reference | (2012) 14:4 Genetics in Medicine, 361 |
| Author(s) | Dandara C., Adebamowo C., de Vries J., Dove E.S., Fisher E., Gibbs R.A., Hotez P.J., Kickbusch I., Knoppers B.M., Masellis M., Oestergaard M.Z., Pang T., Rotimi C.N. |
| Title | An Idea Whose Time Has Come? An African Foresight Observatory on Genomics Medicine and Data-Intensive Global Science |
| Reference | (2012) 10:1 Current Pharmacogenomics and Personalized Medicine, 7-15. |
| http://www.benthamdirect.org/pages/content.php?CPPM/2012/00000010/00000001/002AF.SGM |
| Author(s) | Ekström L., Gök E., Johansson M., Garle M., Rane A., Schulze J.J. |
| Title | Doping and Genetic Testing: Sex Difference in UGT2B15 Expression, Testosterone Glucuronidation Activity and Urinary Testosterone/Epitestosterone Glucuronide Ratio. |
| Reference | (2012) 10: 2 Current Pharmacogenomics and Personalized Medicine 138. |
| Author(s) | Zawati M.H. |
| Title | Les conseillers en génétique et les professions médicales et infirmières au Québec: des frontières brouillées ? |
| Reference | (2012) 6:1 MJLH 137 |
| Author(s) | Allen C., Foulkes W.D. |
| Title | Qualitative Thematic Analysis of Consent Forms used in Cancer Genome Sequencing |
| Reference | (2011) 12 BMC Medical Ethics, 14 |
| http://www.biomedcentral.com/content/pdf/1472-6939-12-14.pdf |
| Author(s) | Thorogood A., Knoppers B.M., Dondorp W.J., De Wert G.M.W.R. |
| Title | Whole-Genome Sequencing and the Physician |
| Reference | (2012) 81 Clinical Genetics, 511 |
| Author(s) | Dove E.S., Joly Y., Knoppers B.M. |
| Title | Power to the People: A Wiki-governance Model for Biobanks |
| Reference | (2012) 13:5 Genome Bioliogy: 158. |
| http://genomebiology.com/2012/13/5/158 |
| Author(s) | Joly Y., Livingstone A., Dove E.S. |
| Title | Moving Beyond Commercialization: Strategies to Maximize the Economic and Social Impact of Genomics Research |
| Reference | (2012) No. 5 Genome Canada Policy Brief GE3LS Series, 1–14. |
| http://www.genomecanada.ca/medias/pdf/en/valorisationRecherche-policy-directions-brief.pdf |
| Author(s) | Dove E.S., Joly Y. |
| Title | The Contested Futures of Biobanks and Intellectual Property |
| Reference | (2012) 11:1 Teoria & derecho: revista de pensamiento juridico (Theory & Law: Journal of Legal Thought) 132-146. |
| Author(s) | Greenberg, C., K.A. McClellan, & D. Avard |
| Title | Beyond Dissemination: A Knowledge Translation Model to Drive Change in Paediatric Genetics |
| Reference | (2012) 1 Journal of Pediatric Genetics, 7 |
| Author(s) | Joly Y., Dove E.S., Knoppers B.M., Bobrow M., Chalmers D. |
| Title | Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO) |
| Reference | (2012) 8:7 PLoS Computational Biology, e1002549. |
| http://www.ploscompbiol.org/article/info%3Adoi%2F10.1371%2Fjournal.pcbi.1002549 |
| Author(s) | Kolker E., Stewart E., Ozdemir V. |
| Title | DELSA Global for ‘‘Big Data’’ and the Bioeconomy: Catalyzing Collective Innovation |
| Reference | (2012) 8:4 Industrial Biotechnology, 176 |
| http://online.liebertpub.com/doi/pdf/10.1089/ind.2012.1528 |
| Author(s) | Zawati M.H., Rioux A. |
| Title | Les biobanques et le retour des résultats de recherche : quo vadis ? |
| Reference | (2012) Actions pour la santé et la recherché médicale en faveur des personnes vulnérables et des pays émergents - IVe Forum des jeunes chercheurs (Les Études Hospitalières, 2012), 283-294 |
| Author(s) | Bombard Y., Miller F.A., Hayeems R.Z., Carroll JC, Avard D., Wilson B.J., Little J, Bytautas J.P., Allanson J., Axler R., Giguere Y., Chakraborty P. |
| Title | Citizens' Values Regarding Research with Stored Samples from Newborn Screening in Canada |
| Reference | (2012) 129:2 Official Journal of the American Academy of Pediatrics, 239 |
| Author(s) | Budin-Ljøsne I., Harris J.R., Kaye J., Knoppers B.M., Tassé A.M., Bravo E., Cambon-Thomsen A., Eriksson M., Kyvik K.O., Litton J.-E., Perola M., Rial-Sebbag E. |
| Title | ELSI Challenges and Strategies of National Biobanks Infrastructures |
| Reference | (2012) 21:2 Norwegian Journal of Epidemiology, 155 |
| http://www.ntnu.no/ojs/index.php/norepid/article/view/1487 |
| Author(s) | De Wert G.M.W.R., Dondorp W.J., Knoppers B.M. |
| Title | Preconception Care and Genetic Risk: Ethical Issues |
| Reference | (2012) 3:3 Journal of Community Genetics, 221 |
| http://www.springerlink.com/content/0j308gx127p110k7/?MUD=MP |
| Author(s) | Harris J.R., Burton P., Knoppers B.M., Lindpaintner K., Bledsoe M., Brookes A.J., Budin-Ljøsne I., Chisholm R., Cox D., Deschênes M., Fortier I., Hainaut P., Hewitt R., Kaye J., Litton J.E., Metspalu A., Ollier B., Palmer L.J., Palotie A., et al. |
| Title | Toward a Roadmap in Global Biobanking for Health |
| Reference | (2012) 20:11 European Journal of Human Genetics, 1105 |
| http://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg201296a.html |
| Author(s) | Kaye J., Meslin E.M., Knoppers B.M., Juengst E.T., Deschênes M., Cambon-Thomsen A., Chalmers D., DeVries J., Edwards K., Hoppe N., Kent A., Adebamowo C., Marshall P., Kato K. |
| Title | Research Priorities. ELSI 2.0 for Genomics and Society |
| Reference | (2012) 336:6082 Science, 673 |
| http://www.sciencemag.org/content/336/6082/673.summary |
| Author(s) | Knoppers B.M. |
| Title | Paediatric Research and the Communication of Not-So Incidental Findings |
| Reference | (2012) 17:4 Paediatric Child Health Journal, 190 |
| http://www.pulsus.com/journals/abstract.jsp?origPg=abstract.jsp&sCurrPg=abstract&jnlKy=5&atlKy=10539&isuKy=1019&isArt=t&fromfold=Current%20Issue&&HCtype=Consumer |
| Author(s) | Knoppers B.M., Avard D., Sénécal K. |
| Title | Newborn Screening Programmes: Emerging Biobanks? |
| Reference | (2012) 21:2 Norwegian Journal of Epidemiology, 163 |
| http://www.cabdirect.org/abstracts/20123149095.html;jsessionid=A6C085A695ED075D439C33264F4A0B28 |
| Author(s) | Knoppers B.M., Avard D., Thorogood A. |
| Title | Informed Consent in Genetics |
| Reference | (2012) John Wiley & Sons, 1 |
| http://onlinelibrary.wiley.com/doi/10.1002/9780470015902.a0005199.pub2/full |
| Author(s) | Madadi P., Avard D., Koren G. |
| Title | Pharmacogenetics of Opioids for the Treatment of Acute Maternal Pain During Pregnancy and Lactation |
| Reference | (2012) 13:6 Current Drug Metabolism, 721 |
| http://www.ncbi.nlm.nih.gov/pubmed/22452458 |
| Author(s) | Murtagh M.J., Thorisson G.A., Wallace S.E., ... Knoppers B.M. et al |
| Title | Navigating the Perfect [Data] Storm |
| Reference | (2012) 21:2 Norwegian Journal of Epidemiology, 203 |
| http://www.ntnu.no/ojs/index.php/norepid/article/view/1495 |
| Author(s) | Wilson B.J., Carroll J.C., Allanson J., ... Avard D. et al |
| Title | Family History Tools in Primary Care: Does One Size Fit All |
| Reference | (2012) 15:3-4 Public Health Genomics, 181 |
| http://www.ncbi.nlm.nih.gov/pubmed/22488461 |
| Author(s) | Ozdemir V., Cho W.C.S. |
| Title | Theranostics: Rethinking Postgenomics Diagnostics |
| Reference | (2012) 12:8 Expert Review of Molecular Diagnostics |
| http://www.expert-reviews.com/doi/pdfplus/10.1586/erm.12.127 |
| Author(s) | Wallace S., Lazor S., Knoppers, B.M. |
| Title | What is in a Clause? A Comparison of Clauses from Population Biobank and Disease Biobank Consent Materials |
| Reference | Trust in Biobanking (Berlin: Springer-Verlang, 2012) |
| Author(s) | Wallace, S., Knoppers, B.M. |
| Title | The Role of P3G in Encouraging Public Trust in Biobanks |
| Reference | Trust in Biobanking (Berlin: Springer-Verlag, 2012) |
| Author(s) | Faraj S.A., Kolker E., Bevilacqua L., Ozdemir V. |
| Title | Collective theranostics and post-genomics entrepreneurship: Rethinking innovations as knowledge ecosystems built by complex collaboration. |
| Reference | (2012) 12:8 Expert Review of Molecular Diagnostics |
| http://www.expert-reviews.com/doi/pdfplus/10.1586/erm.12.124 |
| Author(s) | Dove E.S., Ozdemir V., Joly Y. |
| Title | Harnessing Omics Sciences, Population Databases, and Open Innovation Models for Theranostics-Guided Drug Discovery and Development |
| Reference | (2012) Drug Development Research DOI: 10.1002/ddr.21035 |
| Author(s) | Dove E.S., Faraj S.A., Kolker E., Ozdemir V. |
| Title | Designing a Post-Genomics Knowledge Ecosystem to Translate Pharmacogenomics to Public Health Action |
| Reference | (2012) 4:91 Genome Medicine |
| http://genomemedicine.com/content/4/11/91/abstract#B2 |
| Author(s) | Ngueng Feze I., Joly Y. |
| Title | Droit, médecine personnalisée et pharmacogénomique : à la recherche d'une parfaite alchimie |
| Reference | Le droit, vecteur de la gouvernance en santé? Défis théoriques et enjeux pratiques (Sherbrooke: Les Éditions Revue de droit de l'Université de Sherbrooke, 2012)
|
| Author(s) | Joly Y. |
| Title | Propriété intellectuelle et modèles de collaboration ouverte |
| Reference | JurisClasseur Quebec - Collection Droit des affaires - Propriete intellectuelle (Montreal: LexisNexis Canada Inc., 2012) |
| Author(s) | Milius D. |
| Title | Personalized Nutrition, Genomics and the Right to Food: No Person is an Island |
| Reference | (2012) 10:4 Current Pharmacogenomics and Personalized Medicine, 255 |
| Author(s) | Zawati M.H., Tassé A.M. |
| Title | To Share or Not to Share? Secondary Use in Public Health Emergencies |
| Reference | in Canadian Institutes of Health Research – Institute of Population and Public Health. (2012). Population and Public Health Ethics: Cases from Research, Policy, and Practice. University of Toronto Joint Centre for Bioethics: Toronto, ON. |
| Author(s) | Zawati M.H., Rioux A., Hétu M. et al. |
| Title | Rapport Final - Le médecin face aux nouvelles technologies dans le domaine médical: nouvelles responsabilités? |
| Reference | Final Report, Canadian Bioethics Society's Pre-conference Expert Forum, 2012. |
| http://www.genomicsandpolicy.org/Ressources/RapportFinalSeptembre2012.pdf |
| Author(s) | Ozdemir V, Avard D, Knoppers BM |
| Title | Case Discussion in Response to Worldwide and Local Anti-Malaria Initiatives |
| Reference | Population and Public Health Ethics: Cases from Research, Policy, and Practice (Toronto: University of Toronto Joint Centre for Bioethics, 2012) (also available in French) |
| Author(s) | Romeo-Casabona C., Nicolas P., Knoppers B.M., Joly Y., Wallace S.E., Chalmers D., Dyke S., Kennedy K., Troncoso A., Kaan T., Rial-Sebbag E. |
| Title | Legal Aspects of Genetic Databases for International Biomedical Research: The Example of the International Cancer Genome Consortium (ICGC) |
| Reference | (2012) 37 Law and the Human Genome Review, 15 |
| Author(s) | Joly Y., Dove E.S., Kennedy K.L., Bobrow M., Ouellette B.F. Francis, Dyke S.O.M., Kato K., Knoppers B.M. |
| Title | Open Science and Community Norms: Data Retention and Publication Moratoria Policies in Genomics Projects |
| Reference |
| Author(s) | Harmon S.H.E., Caulfield T., Joly Y. |
| Title | Commercialisation versus Open Science: Making Sense of the Message(s) in the Bottle |
| Reference | (2012) 12:1 Medical Law International, 3 |
| Author(s) | Joly Y., Allen C., Knoppers B.M. |
| Title | Currents in Contemporary Bioethics. Open Access as Benefit Sharing? The Example of Publicly Funded Large-Scale Genomic Databases |
| Reference | (2012) 40:1 Journal of Law Medicine and Ethics, 143 |
| Author(s) | Kleiderman E., Avard D., Black L., Diaz Z., ar al. (including Knoppers B.M.) |
| Title | Recruiting Terminally Ill Patients into Non-Therapeutic Oncology Studies: Views of Health Professionals |
| Reference | (2012) 13:1 BMC Medical Ethics, 33 |
| Author(s) | Avard D., Black L., Samuel J., Griener G., Knoppers B.M. |
| Title | Best Practices for Research Involving Children and Adolescents: Genetic, Pharmaceutical and Longitudinal Studies |
| Reference | Centre of Genomics and Policy (CGP), Maternal Infant Child and Youth Research Network (MICYRN), December 2012, 1 |
| Author(s) | Black L., Knoppers B.M., Avard D., Simard J. |
| Title | Legal Liability and the Uncertain Nature of Risk Prediction: The Case of Breast Cancer Risk Prediction Models |
| Reference | (2012) 15:6 Public Health Genomics, 327 |
| Author(s) | The 1,000 Genomes Project Consortium (Knoppers B.M.) |
| Title | An Integrated Map of Genetic Variation from 1,092 Human Genomes |
| Reference | (2012) 491:7422 Nature, 56 |
| Author(s) | Knoppers B.M., Dove E.S., Litton J.E., Nietfeld J.J. |
| Title | Questioning the Limits of Genomic Privacy |
| Reference | (2012) 9:3 American Journal of Human Genetics, 577 |
| Author(s) | Knoppers B.M. |
| Title | Children First |
| Reference | (2012) 25:4 GeneWatch, 16 |
| Author(s) | Isasi R., Knoppers B.M., Andrews P.W., Bredenoord A., Colman A., Hin L.E., Hull S., Kim O.-J., Lomax G., Morris C., Sipp D., Stacey G., Wahlstrom J., Zeng F. |
| Title | Disclosure and Management of Research Findings in Stem Cell Research and Banking: Policy Statement |
| Reference | (2012) 7:3 Regenerative Medicine, 439 |
| Author(s) | Clarke L., Zheng-Bradley X., [...] & The Genomes project Consortium (Knoppers B.M.) |
| Title | The 1000 Genomes Project: Data Management and Community Access |
| Reference | (2012) 9:5 Nature Methods, 459 |
| Author(s) | Bubela T., Reshef A., Li M.D., Atkins H., Caulfield T., Culme-Seymour E., Gold E.R., Illes J., Isasi R., McCabe C., Ogbogu U., Piret J., Mason C. |
| Title | Enabling Advanced Cell Therapies (EnACT): Invitation to an Online Forum on Resolving Barriers to Clinical Translation |
| Reference | (2012) 7:6 Regenerative Medicine, 735 |
| Author(s) | Isasi R. |
| Title | Alliance, Collaborations and Consortia: The International Stem Cell Forum and its Role in Shaping Global Governance and Policy |
| Reference | (2012) 7:6 Suppl. Regenerative Medicine, 84 |
| Author(s) | Page M., Isasi R. |
| Title | Stem Cell Banks: Investing in the Promise of Cancer Stem Cell Science |
| Reference | (2012) Drug Discovery World, 35 |
| Author(s) | von Tigerstrom B., Nguyen M.T., Knoppers B.M. |
| Title | Regulation of Stem Cell-Based Therapies in Canada: Current Issues and Concerns |
| Reference | (2012) 8:3 Stem Cell Reviews and Reports, 623 |
| Author(s) | Joly Y., Hemmings F. |
| Title | Bilski v. Kappos and Biotechnology Patents: Back to the Future? |
| Reference | Intellectual Property and Emerging Technologies: The New Biology (Cheltenham, U.K. and Northampton, Mass.: Edward Elger Publishing, 2012) |
| Author(s) | Samuël J., Knoppers B.M., Avard D. |
| Title | Paediatric Biobanks: What Makes Them so Unique? |
| Reference | (2012) 48:2 Journal of Paediatrics and Child Health, E1 |
| Author(s) | Caulfield T., Harmon S.H.E., Joly Y. |
| Title | Open science versus commercialization: a modern research conflict? |
| Reference | (2012) 4:2 Genome Medicine, 1 |
| Author(s) | Burstein M.T., Kyryakov P., Beach A., Richard V.R., Koupaki O., Gomez-Perez A., Leonov A., Levy S., Noohi F., Titorenko VI. |
| Title | Lithocholic acid extends longevity of chronologically aging yeast only if added at certain critical periods of their lifespan. |
| Reference | Cell Cycle. 2012;11(18). |
2011 Open
2011 Close
| Author(s) | Zawati MH, Van Ness B et Knoppers BM |
| Title | Les découvertes fortuites dans la recherche en génomique: une revue des normes internationales |
| Reference | (2011) 9:1 GenEdit 1 |
| http://www.humgen.org/int/GE/fr/2011-1.pdf |
| Author(s) | Zawati MH, Van Ness B and Knoppers BM |
| Title | Incidental findings in Genomic Research: A Review of International Norms |
| Reference | (2011) 9:1 GenEdit, 1 |
| http://www.humgen.org/int/GE/en/2011-1.pdf |
| Author(s) | Knoppers B.M., Zawati M.H. |
| Title | Population Biobanks and Access |
| Reference | in S. Rodota, P. Zatti (eds.), Il Governo del Corpo: Trattato di Biodiritto, Giuffrè Editore, 1181-1194 |
| Author(s) | Pathmasiri S., Deschênes M., Joly Y., Mrejen T., Hemmings F., Knoppers B.M. |
| Title | Intellectual Property Rights in Publicly Funded Biobanks: Much Ado About Nothing? |
| Reference | (2011) 29:4 Nature Biotechnology, 319 |
| Author(s) | Ozdemir V., Smith C., Bongiovanni K., Cullen D., Knoppers B.M., Lowe A., Peters M., Robbins R., Stewart E., Yee G., Yu Y-K., Kolker E. |
| Title | Policy and Data-Intensive Scientific Discovery in the Beginning of the 21st Century |
| Reference | (2011) 15:4 OMICS: A Journal of Integrative Biology, 221 |
| http://www.liebertonline.com/doi/pdfplus/10.1089/omi.2011.0007 |
| Author(s) | Samuël J., Knoppers B.M., Avard D. |
| Title | Medical Research Involving Children: A Review of International Policy Statements |
| Reference | Health Care Ethics: Core and Emerging Issues (London: SAGE, 2011) |
| Author(s) | Ozdemir V., Muljono D.H., Pang T., Ferguson L.R., Manamperi A., Samper S., Someya T., Tassé A.M., Tsai S.-J., Zhou H.-H., Lee E.J.D. |
| Title | Asia-Pacific Health 2020 and Genomics without Borders: Co-Production of Knowledge by Science and Society Partnership for Global Personalized Medicine |
| Reference | (2011) 9:1 Current Pharmacogenomics and Personalized Medicine, 1 |
| http://www.benthamscience.com/cppm/openaccessarticles/cppm9-1/001AF.pdf |
| Author(s) | Howard H.C., Joly Y., Avard D., Laplante N., Phillips M., Tardif J.C. |
| Title | Informed consent in the context of pharmacogenomic research: ethical considerations |
| Reference | (2011) Pharmacogenomics Journal advance online publication 29 March 2011; doi: 10.1038/tpj.2011.11 |
| Author(s) | Madadi P., Joly Y., Avard D., Chitayat D.C., Smith M.A., Ross C.J.D., Carleton B.C., Hayden M.R., Koren G. |
| Title | The Communication of Pharmacogenetic Research Results: Participants Weigh in on their Informational Needs in a Pilot Study |
| Reference | (2011) 18:1 Journal of Population Therapeutics and Clinical Pharmacology, e152 |
| Author(s) | Joly Y., Tassé A.M., Dove E.S. |
| Title | Balancing Privacy Protections with Open, Collaborative, Biomedical Research: Implications for Updating the CIHR Privacy Best Practices |
| Reference | (Ottawa, CIHR, 2011) |
| Author(s) | Knoppers B.M., Isasi R., Benvenisty N., Kim O.J., Lomax G., Morris C., Murray TH., Lee EH., Perry M., Richardson G., Sipp D., Tanner K., Wahlström J., de Wert G., Zeng F. |
| Title | Publishing SNP Genotypes of Human Embryonic Stem Cell Lines: Policy Statement of the International Stem Cell Forum Ethics Working Party. |
| Reference | (2011) 7:3 Stem Cell Reviews and Reports, 482 |
| Author(s) | Borry P., Henneman L., Lakeman P., Ten Kate L.P., Cornel M.C., Howard H. |
| Title | Preconceptional genetic carrier testing and the commercial offer directly-to-consumers |
| Reference | (2011) 26:5 Human Reproduction 972 |
| Author(s) | Ozdemir V., Knoppers B.M. |
| Title | Future Outlook: Emerging Innovative Approaches for Effective Integration of Medical Research in Clinical Practice |
| Reference | Forward Look: Implementation of Medical Research in Clinical Practice (Strasbourg: European Science Foundation, 2011) 58 |
| http://www.esf.org/fileadmin/FlipBooks/Flip/flip_report.html#/1/ |
| Author(s) | Ozdemir V., Joly Y., Knoppers B.M. |
| Title | ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement? |
| Reference | (2011) 11:3 American Journal of Bioethics 11 |
| http://www.informaworld.com/smpp/content~content=a934769011~db=all |
| Author(s) | Su Y., Howard H.C., Borry P. |
| Title | Users’ Motivations to Purchase Direct-to-Consumer Genome-Wide Testing: An Exploratory Study of Personal Stories |
| Reference | (2011) 2:3 Journal of Community Genetics, 135 |
| http://www.springerlink.com/content/g8344538h3776623/abstract/ |
| Author(s) | Tassé A.M., Knoppers B.M. |
| Title | Governance and Use of Previously Stored Human Biological Material in the Public Health Context: Legal and Ethical Issues |
| Reference | (Ottawa, PHAC, 2011) |
| Author(s) | Tassé A.M., Knoppers B.M. |
| Title | Guidance for Biobanking: Anonymization and Disposal of Human Biological Materials from Existing Collection |
| Reference | (Ottawa, Health Canada, 2011) |
| Author(s) | Joly Y., Koutrikas G., Tassé A.M., Issa A., Carleton B., Hayden M., Rieder M.J., Ramos-Paque E., Avard D. |
| Title | Regulatory Approval for New Pharmacogenomics Tests: A Comparative Overview |
| Reference | (2011) 66:1 Food and Drug Law Journal, 1 |
| http://www.fdli.org/pubs/journal/toc/vol66_1.html |
| Author(s) | Sénécal K., Giguère Y., Bouffard C., Avard D. |
| Title | Le dépistage néonatal de l’anémie falciforme : enjeux de santé publique, d’éthique et particularités ethniques au Québec |
| Reference | (2011) 33 Sociologie Santé, 293 |
| http://revuesociologiesante.free.fr/spip.php?article107 |
| Author(s) | Brand A., Knoppers B.M., Ambrosino E. |
| Title | Public Health Genomics Journal: Adjusting the Agenda to Future Needs |
| Reference | (2011) 14:3 Public Health Genomics, 125 |
| Author(s) | Howard H.C., Avard D., Borry P. |
| Title | Are the Kids Really All Right? Direct-to-Consumer Genetic Testing in Children: Are Company Policies Clashing with Professional Norms? |
| Reference | (2011) 19:11 European Journal of Human Genetics, 1122 |
| http://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg201194a.html |
| Author(s) | Zawati M.H., Borry P., Howard H.C. |
| Title | Closure of Population Biobanks and Direct-to-Consumer Genetic Testing Companies |
| Reference | (2011) 130:3 Human Genetics, 425 |
| Author(s) | Zawati M.H., Hendy M., Joly Y. |
| Title | Incidental Findings in Data Intensive Postgenomics Science and Legal Liability of Clinician-Researchers: Ready for Vaccinomics? |
| Reference | (2011) 15:9 OMICS, DOI: 10.1089/omi.2010.0137 |
| Author(s) | Cambon-Thomsen A., Thorisson G.A. and Mabile L. for the BRIF workshop group (including Zawati, M.H.) |
| Title | The role of a bioresource research impact factor as an incentive to share human bioresources |
| Reference | (BRIF workshop group: Andrieu S., Bertier G., Boeckhout M., Carpenter J., Dagher G., Dalgleish R., Deschênes M., di Donato J.H., Filocamo M., Goldberg M., Hewitt R., Hofman P., Kauffman F., Leitsalu L, Lomba I., Melegh B., Metspalu A., Miranda L., Napolitani F., Oestergaard M.Z., Parodi B., Pasterk M., Reiche A., Rial-Sebbag E., Rivalle G., Rochaix P., Susbielle G., Tarasova L., Thomsen M., Zawati M.H., Zins M.) (2011) 43 Nat. Genet., 503 |
| Author(s) | Joly Y., Koutrikas G., Ramos-Paque E., Zawati M.H., Gardy J. |
| Title | Diagnostic Testing for Vaccinomics: Is the Regulatory Approval Framework Adequate? A Comparison of Canada, the United States and Europe |
| Reference | (2011) 15:9 OMICS, 597 |
| Author(s) | Knoppers B.M., Harris J.R., Tassé A.M., Budin-Ljøsne I., Kaye J., Deschênes M., Zawati M. |
| Title | Towards a data sharing Code of Conduct for international genomic research |
| Reference | (2011) 3:7 Genome Medicine, 1 |
| Author(s) | Tassé A.M. |
| Title | Biobanking and deceased persons |
| Reference | (2011) 130 Hum Genet, 415 |
| Author(s) | Zawati M.H., Knoppers B.M., Rioux A. |
| Title | Guidance for Biobanks: Models of Consent for Public Health |
| Reference | Report submitted to the Public Health Agency of Canada (PHAC), 18 March 2011 |
| Author(s) | Knoppers B.M., Zawati M.H. |
| Title | De l'éthique et des avocats: les comités d'éthique dans le milieu hospitalier |
| Reference | in Éthique, profession juridique et société - Collection de droit 2011-2012, volume hors série, École du Barreau (Cowansville: Éditions Yvon Blais, 2011) |
| Author(s) | Hens K., Lévesque E., Dierickx K. |
| Title | Children and Biobanks: A Review of the Ethical and Legal Discussion |
| Reference | (2011) 130 Hum Genet, 403 |
| http://www.springerlink.com/content/37m67n528658x033/ |
| Author(s) | Kimmelman J,. McDonald M., Avard D. |
| Title | A Guide to the Perplexed: How to Nagivate Conflicting Research Ethics Policies |
| Reference | (2011) 19:3 Health Law Review, 56 |
| Author(s) | Cox S., Ross K., Townsend A., Avard D., Woodgate R. |
| Title | From Stakeholders to Shareholders: Engaging Consumers in Health Research |
| Reference | (2011) 19:3 Health Law Review, 63 |
| Author(s) | Reddy P.J., Jain R., Paik Y.K., Downey R., Ptolemy A.S., Ozdemir V., Srivastava S. |
| Title | Personalized Medicine in the Age of Pharmacoproteomics: A Close up on India and Need for Social Science Engagement for Responsible Innovation in Post-Proteomic Biology. |
| Reference | (2011) 9:3 Current Pharmacogenomics and Personalized Medicine, 159 |
| http://www.benthamdirect.org/pages/content.php?CPPM/2011/00000009/00000003/003AF.SGM |
| Author(s) | Kamal S.M., Warnich L., Ferguson L.R., Srivastava S., Ray S., Avard D., Joly Y., Huynh M.L., Page M., Masellis M., Dove E.S., Gurwitz D., Ozdemir V. |
| Title | Forward Look: Tenth Anniversary of the Human Genome Sequence and 21st Century Postgenomics Global Health — A Close Up on Africa and Women’s Health. |
| Reference | (2011) 9:3 Current Pharmacogenomics and Personalized Medicine, 148. |
| http://www.benthamdirect.org/pages/content.php?CPPM/2011/00000009/00000003/001AF.SGM |
| Author(s) | Ozdemir V., Faraj S.A., Knoppers B.M. |
| Title | Steering Vaccinomics Innovations with Anticipatory Governance and Participatory Foresight. |
| Reference | (2011) 15:9 OMICS, doi:10.1089/omi.2011.0087 |
| http://www.liebertonline.com/doi/abs/10.1089/omi.2011.0087 |
| Author(s) | Ozdemir V., Pang T., Knoppers B.M., Avard, D., Faraj S.A., Zawati M.H., Kolker E. |
| Title | Vaccines of the 21st Century and Vaccinomics: Data-Enabled Science Meets Global Health to Spark Collective Action for Vaccine Innovation. |
| Reference | (2011) 15:9 OMICS, 523 |
| http://www.liebertonline.com/doi/abs/10.1089/omi.2011.03ed |
| Author(s) | Dove E.S., Knoppers B.M., Joly, Y. |
| Title | Trade-Secret Model: Legal Limitations |
| Reference | (2011)333:6049 Science, 1575 |
| http://www.sciencemag.org/content/333/6049/1575.1.full |
| Author(s) | Joly, Y. |
| Title | Personalized Medicine in Developing Countries: A Roadmap to Personalized Innovation |
| Reference | (2011)9:3 Current Pharmacogenomics and Personalized Medicine, 156-158 |
| Author(s) | Joly, Y., Zepps N., Knoppers B.M. |
| Title | Genomic Databases Access Agreements: Legal Validity and Possible Sanctions |
| Reference | (2011)130:3 Human Genetics, 441–449 |
| Author(s) | Ozdemir V., Rosenblatt D., Warnich L., Srivastava S., Tadmouri G., Aziz R., Reddy P., Manamperi A., Dove E.S., Joly Y., Zawati M., Hizel C., Yazan Y., John L., Vaast E., Ptolemy A., Faraj S., Kolker E., Cotton R.G.H. |
| Title | Towards an Ecology of Collective Innovation: Human Variome Project (HVP), Rare Disease Consortium for Autosomal Loci (RaDiCAL) and Data-Enabled Life Sciences Alliance (DELSA) |
| Reference | (2011) 9:4 Current Pharmacogenomics and Personalized Medicine, 243 |
| http://www.benthamdirect.org/pages/content.php?CPPM/2011/00000009/00000004/002AF.SGM |
| Author(s) | Dove E.S. |
| Title | The Genetic Privacy Carousel: A Discourse on Proposed Genetic Privacy Bills and the Co-Evolution of Law and Science |
| Reference | (2011) 9:4 Curr. Pharmacogenomics Person. Med., 252 |
| http://www.benthamdirect.org/pages/content.php?CPPM/2011/00000009/00000004/003AF.SGM |
| Author(s) | Ngueng Feze I, Borda-Rodriguez A, Huzair F. |
| Title | Not So Simple: Situating Postgenomics Personalized Medicine in the Regional Context in Africa for Global and Women's Health |
| Reference | (2011) 9:4 Current Pharmacogenomics and Personalized Medicine, 332 |
| http://www.benthamdirect.org/pages/content.php?CPPM/2011/00000009/00000004/008AF.SGM |
| Author(s) | Zawati MH, Rioux A |
| Title | Biobanks and the Return of Research Results: Out with the Old and In with the New? |
| Reference | (2011) 39:4 JLME, 614 |
| Author(s) | Grizzle W.E., Knoppers B.M., Zeps N., Hewitt S.M., Sullivan K. |
| Title | What Are the Most Oppressing Legal and Ethical Issues Facing Biorepositories and What are Some Strategies to Address Them? |
| Reference | (2011) 9:4 Biopreservation and Biobanking, 317 |
| Author(s) | Sénécal K., Giguere Y., Bouffard C., Avard D. |
| Title | Le dépistage néonatal de l'anémie falciforme: enjeux de santé publique, d'éthique et particularités ethniques au Québec |
| Reference | (2011) 33 Sociologie Santé, 293-310
|
| Author(s) | Black, L., K.A. McClellan |
| Title | Familial Communication of Research Results: A Need to Know? |
| Reference | (2011) 39 Journal of Law Medicine and Ethics, 605 |
| http://www.ncbi.nlm.nih.gov/pubmed?term=black%20l%20mcclellan%20ka |
| Author(s) | Knoppers B.M., Dam A. |
| Title | Return of results: towards a lexicon? |
| Reference | (2011) 39:4 J. Law Med. Ethics, 577 |
| Author(s) | Knoppers B.M., Lévesque E. |
| Title | Introduction. Return of Research Results: How Should Research Results be Handled? |
| Reference | (2011) 39:4 Journal of Law, Medicine and Ethics, 574 |
| http://onlinelibrary.wiley.com/doi/10.1111/j.1748-720X.2011.00623.x/pdf |
| Author(s) | Lévesque E., Joly Y., Simard J. |
| Title | Return of research results: General principles and international perspectives |
| Reference | (2011) 39:4 Journal of Law, Medicine and Ethics, 583. |
| http://onlinelibrary.wiley.com/doi/10.1111/j.1748-720X.2011.00625.x/pdf |
| Author(s) | Lévesque E., Knoppers B.M. |
| Title | Principes assurant la protection des enfants participant à des biobanques : du stade prénatal jusqu'aux adolescents |
| Reference | (2011) 5:2 Revue de droit et santé de McGill, 163. |
| http://mjlh.mcgill.ca/pdfs/vol5-2/MJLH%20Vol%20V,%20No.%202%20-%20Levesque.pdf |
| Author(s) | Avard D., Sénécal K., Madadi P., Sinnett D. |
| Title | Pediatric Research & Return of Individual Research Results |
| Reference | (2011) 39:4 Journal of Law Medicine and Ethics, 593 |
| Author(s) | Oliva-Sánchez P.F., Zaga-Galante J., Arellano-Mendez A., Millet-Hassey F., Rosenthal-Peretzman J., Isasi R. |
| Title | HumGen en Español: Una Herramienta Legislativa y Política en Genómica Humana y Salud Pública |
| Reference | (2011) 29:6 Pan American Journal of Public Health, 475 |
| Author(s) | Isasi R., Knoppers B.M. |
| Title | From Banking to International Governance: Fostering Innovation in Stem Cell Research |
| Reference | (2011) 2011 Stem Cell International, 1 |
| Author(s) | Kourelis M., Isasi R., Knoppers B.M. |
| Title | La recherche sur les embryons et le droit pénal : entre prohibition et permissivité? |
| Reference | (2011) 82:1 Revue internationale de droit penal, 65 |
| Author(s) | Willemse L., Isasi R., Lyall D. |
| Title | Global Update - Canada |
| Reference | (2011) 6:6 Regenerative Medicine, 140 |
| Author(s) | Joly Y. |
| Title | Personalized Medicine is not a Sprint, But a Relay |
| Reference | (December 2011) The Genoscape, 1 |
| Author(s) | Isasi R., Knoppers B.M., Lomax G. |
| Title | Sustained Interaction: The New Normal for Stem Cell Repositories? |
| Reference | (2011) 6:6 Regen. Med., 783 |
| Author(s) | Budin-Ljøsne, I., Tassé A.M., Knoppers B.M., Harris J.R. |
| Title | Bridging Consent: From Toll Bridges to Lift Bridges? |
| Reference | (2011) 4:69 BMC Medical Genomics,1 |
| Author(s) | Marth G.T., Yu F., Indap A.R., Garimella K., [...] 1000 Genomes Project (Knoppers B.M.) |
| Title | The Functional Spectrum of Low-frequency Coding Variation |
| Reference | (2011) 12:9 Genome Biology, 1 |
| Author(s) | Knoppers B.M., Hudson T.J. |
| Title | The Art and Science of Biobanking |
| Reference | (2011) 130:3 Human Genetics, 329 |
| Author(s) | Fortier I., Doiron D., Little J., Ferretti V., L'Heuruex F., Stolk R.P., Knoppers B.M., Hudson T.J., Burton P.R. on behalf of the International Harmonization Initiative |
| Title | Is Rigorous Retrospective Harmonization Possible? Application of the DataSHaPER Approach Across 53 Large Studies |
| Reference | (2011) 40:5 International Journal of Epidemiology, 1314 |
| Author(s) | Gravel S., Henn B.M., Gutenkunst R.N., Indap A.R., Marth G.T., Clark A.G., Yu F., Gibbs R.A., 1000 Genomes Project (Knoppers B.M.) |
| Title | Demographic History and Rare Allele Sharing Among Human Populations |
| Reference | (2011) 108:29 Proc Natl Acad Sci U S A, 11983 |
| Author(s) | Conrad D.F., Keebler J.E., DePristo M.A., Lindsay S.J., [...] 1000 Genomes Project (Knoppers B.M.) |
| Title | Variation in Genome-wide Mutation Rates within and Between Human Families |
| Reference | (2011) 43:7 Nature Genetics, 712 |
| Author(s) | Knoppers B.M., Harris J.R., Burton P.R., Murtagh M., Cox D., Deschênes M., Fortier I., Hudson T.J., Kaye J., Lindpaintner K. |
| Title | From Genomic Databases to Translation: A Call to Action |
| Reference | (2011) 37:8 Journal of Medical Ethics, 515 |
| Author(s) | Ngueng Feze I., Joly Y., Zawati M., Knoppers B.M. |
| Title | Genomic Population Biobanks: Legal, Ethical and Social Aspects |
| Reference | (Paris, UIA, 2011) |
| Author(s) | Wallace S.E., Knoppers B.M. |
| Title | Harmonised consent in international research consortia: an impossible dream? |
| Reference | (2011) 7 Genomics, Society and Policy, 35 |
| Author(s) | Vermeulen E., Schmidt M.K., Cornel M.C., Knoppers B.M., van Leeuwen F.E., Aaronson N.K. |
| Title | Connective tissue: Cancer patients' Attitudes Towards Medical Research Using Excised (Tumour) Tissue |
| Reference | (2011) 6:4 BioSocieties, 466 |
| Author(s) | Tassé A.M. |
| Title | The Return of Results of Deceased Research Participants |
| Reference | (2011) 39:4 Journal of Law, Medicine and Ethics, 621 |
| Author(s) | Tassé A.M. |
| Title | Institutional Research Ethics Policies and Procedures Manuals: Required Elements |
| Reference | (Ottawa, PHAC, 2011) |
2010 Open
2010 Close
| Author(s) | Bordet S., Nguyen T.M., Knoppers B.M., Isasi R. |
| Title | Use of Umbilical Cord Blood for Stem Cell Research |
| Reference | (2010) 32:1 JOGC, 58 |
| Author(s) | Nguyen MH, Knoppers BM |
| Title | Prenatal and Preimplantation Diagnosis: International Policy Perspectives |
| Reference | in Milunksy A, and Milunsky JM, eds. Genetic Disorders and the Fetus: Diagnosis, Prevention and Treatment (New Jersey: Wiley-Blackwell, 2010), 1091 |
| Author(s) | Knoppers B.M., Isasi R., Willemse L. |
| Title | Stem Cell Charter |
| Reference | (2010) 5:1 Regen. Med., 5 |
| Author(s) | Bordet S., Bennett J., Knoppers B.M., McNagny K.M. |
| Title | The changing landscape of human-animal chimera research: A Canadian regulatory perspective |
| Reference | (2010) 4 Stem Cell Research, 10 |
| http://www.sciencedirect.com/science/journal/18735061 |
| Author(s) | Avard D., Harmsen E. |
| Title | Informed Consent and Multiplex Genetic Screening |
| Reference | Encyclopedia of Life Sciences (Chichester: John Wiley & Sons, Ltd., 2010) |
| Author(s) | Tassé A. M., Letendre M, Knoppers BM |
| Title | La recherche et les personnes décédées: l'utilisation secondaire des dossiers médicaux et du matériel biologique |
| Reference | (2010) 8:1 GenEdit, 1 |
| http://www.humgen.org/int/GE/fr/2010-1.pdf |
| Author(s) | Tassé A. M., Letendre M, Knoppers BM |
| Title | Research and Deceased Persons : The Secondary Use of Medical Data and Biological Materials |
| Reference | (2010) 8:1 GenEdit, 1 |
| http://www.humgen.org/int/GE/en/2010-1.pdf |
| Author(s) | Bombard Y., Miller F.A., Hayeems R.Z., Avard D., Knoppers B.M. |
| Title | Reconsidering reproductive benefit through newborn screening: a systematic review of guidelines on preconception, prenatal and newborn screening |
| Reference | (2010) 18:7 European Journal of Human Genetics, 751 |
| Author(s) | Borry P., Howard H.C., Sénécal K., Avard D. |
| Title | Health-Related Direct-to-Consumer Genetic Testing: A Review of Companies' Policies with Regard to Genetic Testing in Minors |
| Reference | (2010) 9:1 Familial Cancer 51 |
| http://www.springerlink.com/content/u650710254h5m171/ |
| Author(s) | Caulfield T., Knoppers B.M. |
| Title | Consent, Privacy & Research Biobanks |
| Reference | (2010) 1 Genome Canada, 1 |
| http://www.genomecanada.ca/medias/pdf/en/GPS-Policy-Directions-Brief.pdf |
| Author(s) | Joly Y., McClellan K.A., Knoppers B.M. |
| Title | Personalized Vaccines and Public Health Genomics: Anticipating and Monitoring the ELSIs |
| Reference | (2010) 8 Current Pharmacogenomics and Personalized Medicine, 4 |
| Author(s) | Black L., Simard J., Knoppers B.M. |
| Title | Genetic Testing, Physicians and the Law: Will the Tortoise Ever Catch Up with the Hare? |
| Reference | (2010) 16 Ann. Health L.,115 |
| Author(s) | Tassé A.M., Budin-Ljøsne I., Knoppers B.M., Harris J.R. |
| Title | Retrospective access to data: The ENGAGE consent experience |
| Reference | (2010) 18 EJHG, 741 |
| http://www.nature.com/ejhg/journal/v18/n7/full/ejhg201030a.html |
| Author(s) | Lévesque E., Bédard K., Avard D., Simard J. |
| Title | Intéger l'éthique dans la recherche |
| Reference | La malreglementation : Une ethique de la recherche est-elle possible et a quelles conditions? (Montreal: Les Presses de l'Universite de Montreal, 2010) |
| Author(s) | Knoppers B.M. |
| Title | Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent |
| Reference | (2010) 11:6 EMBO reports, 416 |
| Author(s) | Ozdemir V., Knoppers B.M. |
| Title | One Size Does Not Fit All: Toward "Upstream Ethics"? |
| Reference | (2010) 10:6 American Journal of Bioethics, 42 |
| http://www.informaworld.com/smpp/content~db=all?content=10.1080/15265161.2010.482639 |
| Author(s) | Knoppers B.M., Leroux T., Doucet H., Godard B., Laberge C., Stanton-Jean M., Fortin S., Cousineau J., Monardes C., Girard N., Lévesque L., Durand C., Farmer Y., Dion-Labrie M., Bouthillier M.-E., Avard D. |
| Title | Framing Genomics, Public Health Research and Policy: Points to Consider |
| Reference | (2010) 13:4 Public Health Genomics, 224 |
| Author(s) | Knoppers B.M. |
| Title | Des enjeux éthiques à l'évaluation éthique |
| Reference | La malréglementation : Une éthique de la recherche est-elle possible et à quelles conditions? (Montréal: Les Presses de l'Université de Montréal, 2010) |
| Author(s) | Joly Y. |
| Title | Open Biotechnology: Licenses Needed |
| Reference | (2010) 28:5 Nature Biotechnology, 417 |
| Author(s) | Joly Y. |
| Title | Les aventures d’un juriste en terre étrangère |
| Reference | La malréglementation : Une éthique de la recherche est-elle possible et a quelles conditions? (Montréal: Les Presses de l'Université de Montréal, 2010) |
| Author(s) | Black L., Glendon G., Avard D. |
| Title | Intrafamilial Disclosure of Genetic Risk Information for Hereditary Breast Cancer: A Communications Framework? |
| Reference | (2010) 8:2 GenEdit, 1 |
| http://www.humgen.org/int/GE/en/2010-2.pdf |
| Author(s) | Black L., Glendon G et Avard D. |
| Title | La divulgation intra-familiale de l'information génétique concernant le risque de développer un cancer du sein héréditaire: un cadre communicationnel? |
| Reference | (2010) 8:2 GenEdit, 1-6 |
| http://www.humgen.org/int/GE/fr/2010-2.pdf |
| Author(s) | Abdul-Rahman (Zawati) M.H. |
| Title | La pharmacogénomique et la responsabilité civile des médecins |
| Reference | Droit de la santé publique dans un contexte translational: IVe forum des jeunes chercheurs (Bordeaux Centre, Les Études Hospitalières, 2010) |
| Author(s) | Wolfson M., Wallace S.E., Masca N., Rowe G., Sheehan N.A., Ferretti V., LaFlamme P., Tobin M.D., Macleod J., Little J., Fortier I., Knoppers B.M., Burton P.R. |
| Title | DataSHIELD: Resolving a Conflict in Contemporary Bioscience-Performing a Pooled Analysis of Individual-Level Data Without Sharing the Data |
| Reference | (2010) Int. J. Epidemiol., 1372 |
| Author(s) | Howard H.C., Knoppers B.M., Borry P. |
| Title | Blurring Lines. The Research Activities of Direct-to-Consumer Genetic Testing Companies Raise Questions about Consumers as Research Subjects |
| Reference | (2010) 11:8 EMBO reports, 579 |
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2920435/ |
| Author(s) | Bently L., et al. |
| Title | Exclusions From Patentability and Exceptions and Limitations to Patentees' Rights |
| Reference | |
| http://www.wipo.int/edocs/mdocs/scp/en/scp_15/scp_15_3-annex1.pdf |
| Author(s) | Gold R., Joly Y. |
| Title | The Patent System and Research Freedom: A Comparative Study |
| Reference | (2010) WIPO SCP/15/3 Annex VI |
| http://www.wipo.int/edocs/mdocs/scp/en/scp_15/scp_15_3-annex6.pdf |
| Author(s) | Avard D., Stanton Jean M., Grégoire G., Page, M. |
| Title | Public Involvement in Health Genomics: The Reality Behind the Policies |
| Reference | (2010) 34 International Journal of Consumer Studies, 508 |
| Author(s) | Borugian M.J., Robson P., Fortier I., Parker L., McLauglin J., Knoppers B.M., Bédard K., Gallagher R.P., Sinclair S., Ferretti V., Whelan H., Hoskin D., Potter J.D. |
| Title | The Canadian Partnership for Tomorrow Project: Building a Pan-Canadian Research Platform for Disease Prevention |
| Reference | (2010) 182:11 CMAJ, 1197 |
| Author(s) | Lévesque E., Leclerc D., Puymirat J., Knoppers B.M. |
| Title | Developing Registries of Volunteers: Key Principles to Manage Issues Regarding Personal Information Protection |
| Reference | (2010) 36:11 J. Med. Ethics, 712 |
| http://jme.bmj.com/content/early/2010/09/29/jme.2010.036715.full.pdf |
| Author(s) | Borry, P.B., Cornel M.C. , Howard H.C. |
| Title | Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market |
| Reference | (2010) 1:3 Journal of Community Genetics, 101 |
| http://www.springerlink.com/content/1uk1w43425251412/ |
| Author(s) | Knoppers B.M., Avard D., Howard H.C. |
| Title | Direct-to-consumer genetic testing: driving choice? |
| Reference | (2010) 10:8 Expert Rev. Mol. Diagn., 965 |
| http://www.expert-reviews.com/loi/erm |
| Author(s) | Knoppers B.M. & Isasi R. |
| Title | Stem Cell Banking: Between Traceability and Identifiability |
| Reference | (2010) 2:10 Genome Medicine, 73 |
| Author(s) | Ozdemir V., Armengaud J., Dubé L., Aziz R.K., Knoppers B.M. |
| Title | Nutriproteomics and Proteogenomics: Cultivating Two Novel Hybrid Fields of Personalized Medicine with Added Societal Value |
| Reference | (2010) 8:4 Current Pharmacogenomics and Personalized Medicine, 240 |
| http://docserver.ingentaconnect.com/deliver/connect/ben/18756921/v8n4/s1.pdf?expires=1314405786&id=64129995&titleid=99000213&accname=Guest+User&checksum=F1C35F80EBD920C502C7C3D75B6D6D59 |
| Author(s) | Joly Y., Caulfield T., Knoppers B.M., Harmsen E., Pastinen T. |
| Title | The Commercialization of Genomic Research in Canada |
| Reference | (2010) 6:2 Healthcare Policy, 24 |
| Author(s) | Burke W., Burton H., Hall A.E., Karmali M., Khoury M.J., Knoppers B.M., Meslin E.M., Stanley F., Wright C.F., Zimmern R.L. |
| Title | Extending the reach of public health genomics: What should be the agenda for public health in an era of genome-based and "personalized" medicine? |
| Reference | (2010) 12:12 Genetics in Medicine, 785 |
| Author(s) | Joly Y. |
| Title | Clinical Translation of Stem Cell Therapies – Intellectual Property and Anticipatory Governance |
| Reference | (2010) 7:2 SCRIPTed, 265 |
| Author(s) | Madadi P., Joly Y., Avard D., Chitayat D., Smith M.A., Ross C.J.D., Carleton B.C., Hayden M.R., Koren G. |
| Title | Communicating Pharmacogenetic Research Results to Breastfeeding Mothers Taking Codeine: A Pilot Study of Perceptions and Benefits |
| Reference | (2010) 88:6 Clinical Pharmacology & Therapeutics, 792 |
| Author(s) | Joly Y., Braker M., Huynh M. |
| Title | Genetic Discrimination in Private Insurance: Global Perspectives |
| Reference | (2010) 29:4 New Genetics and Society, 351 |
| Author(s) | Isasi R., Knoppers B.M. |
| Title | Beyond the Embryo: Translational, Transdisciplinary and Translational Perspectives on Stem Cell Research |
| Reference | (2010) 7:2 SCRIPTed, 242 |
| http://www.law.ed.ac.uk/ahrc/script-ed/vol7-2/isasi.asp |
| Author(s) | Knoppers B.M., Ho W.C. |
| Title | Biomedical Law and Ethics - Introduction |
| Reference | (2010) 22 (Special Issue) Singapore Academy of Law Journal, 759 |
| Author(s) | Knoppers B.M. |
| Title | Return of Individual Research Results: Why the fuss? |
| Reference | (2010) 43:4 GRAVITAS (The Association of Faculties of Medicine of Canada), 17 |
| Author(s) | Black L., Glendon G., Avard D. |
| Title | Revelación al Interior de la Familia de Información sobre el Riesgo Genético de Cáncer de Mama Hereditario: ¿Un Marco de Comunicación? |
| Reference | (2010) 8:2 GenEdit, 1-6 |
| http://www.humgen.org/int/GE/es/2010-2.pdf |
| Author(s) | Tassé A.M., Letendre M., Knoppers B.M. |
| Title | Investigación y Personas Fallecidas: Uso Secundario de la Información Médica y los Materiales Biológicos |
| Reference | (2010) 8:1 GenEdit 1-9 |
| http://www.humgen.org/int/GE/es/2010-1.pdf |
| Author(s) | Hather G.J., Haynes W., Higdon R., Kolker N., Stewart E.A., Arzberger P., Chain P., Field D., Franza B.R., Lin B., Meyer F., Ozdemir V., Smith C.V., van Belle G., Wooley J., Kolker E. |
| Title | The United States of America and Scientific Research |
| Reference | (2010) 5:8 PLoS One, e12203 |
| http://www.ncbi.nlm.nih.gov/pubmed/20808949 |
| Author(s) | Ozdemir V. |
| Title | Pharmacogenomics: Reflections on the Old and New Social, Ethical and Policy Issues in Postgenomics Medicine. |
| Reference | Pharmacogenomics in Psychiatry. Advances in Biological Psychiatry. Schwab M., Kaschka W., Spina E. eds., (Basel: Karger, 2010) pp. 12-29. |
| http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstractBuch&ArtikelNr=317296&ProduktNr=254002 |
| Author(s) | Tassé A.M., Sénécal K., Samuël J., Avard D., Knoppers B.M. |
| Title | Énoncé de principes sur l’utilisation secondaire de données et de matériel biologique recueillis dans un contexte de soins ou de recherche |
| Reference | (Montréal, RMGA, 2010) |
| http://www.rmga.qc.ca/files/attachments/0000/0130/RMGA-Enonce_de_principes_sur_utilisation_secondaire_2.pdf |
| Author(s) | Abdul-Rahman (Zawati) M.H. |
| Title | Key Ethical Considerations in the Development of Guidelines for the Biobanking of Human Biological Materials: A Discussion Paper |
| Reference | Report submitted to the Public Health Agency of Canada (PHAC), 31 March 2010 |
| Author(s) | Ozdemir V. |
| Title | ELSI Research in an Era of Synthetic Biology and the Human Microbiome Project: Recognizing Context Sensitivity. |
| Reference | (2010) 2:2 American Association of Pharmaceutical Scientists Pharmacogenomics Focus Group (AAPS), 5 |
| Author(s) | Joly Y., Ramos-Paque E. |
| Title | Approval of New Pharmacogenomic Tests: Is the Canadian Regulatory Process Adequate? |
| Reference | (2010) 8:2 Canadian Journal of Law and Technology, 215 |
| Author(s) | Hudson T.J., [...] Joly Y., et al. |
| Title | International Network of Cancer Genome Projects |
| Reference | (2010) 464:7291 Nature, 993 |
| Author(s) | Knoppers B.M., Kirby E., Isasi R. |
| Title | Genetics and Stem Cell Research: Models of International Policy |
| Reference | Bioethics in Singapore: The Ethical Microcosm (Singapore: World Scientific Publishing Co. Pte. Ltd, 2010) |
| Author(s) | Caulfield T., Joly Y. |
| Title | Human Gene Patents and Genetic Testing |
| Reference | Molecular Diagnostics (Burlington: Academic Press, 2010) |
| Author(s) | Warner A., Nelsen A., Bhathena A., Fitzgerlad K., Gilardi S., Kelso E., Knoppers B., McLeod H.L., Nelson R., Uyama Y., Weisman J. Rudman A. |
| Title | Enabling Pharmacogenomic Clinical Trials Through Sampling |
| Reference | (2010) 11:12 Pharmacogenomics, 1649 |
| Author(s) | 1000 Genomes Project Consortium (knoppers B.M.), Abecasis G.R., Altshuler D., Auton A., Brooks L.D., Durbin R.M., Gibbs R.A., Hurles M.E., McVean G.A. |
| Title | A map of human genome variation from population-scale sequencing |
| Reference | (2010) 467:7319 Nature, 1061 |
| Author(s) | Fortier I., Burton P.R., Robson P.J., Ferretti V., Little J., L'Heureux F., Deschênes M., Knoppers B.M., et al. |
| Title | Quality, quantity and harmony: The DataSHaPER approach to integrating data across bioclinical studies |
| Reference | (2010) 39:5 International Journal of Epidemiology, 1383 |
| Author(s) | Caulfield T., Knoppers B.M. |
| Title | Introduction: The Age of Personal Genomics? |
| Reference | (2010) 13:5 Public Health Genomics, 320 |
| Author(s) | Naukkarinen J., Surakka I., Pietiläinen K.H., Rissanen A., Salomaa V., Ripatti S., Yki-Järvinen H., van Duijn C.M., Wichmann H.E., Kaprio J., Taskinen M.R., Peltonen L., ENGAGE Consortium (Knoppers B.M.) |
| Title | Use of Genome-Wide Expression Data to Mine |
| Reference | (2010) 6:6 PLoS Genetics, 1 |
| Author(s) | Bentley L., Sherman B., Borges Barbosa D., Grau-Kuntz K., Basheer S., Purohit S., Reddy P., Visser C., Gold R., Joly Y. |
| Title | Exclusions from Patentability and Exceptions and Limitations to Patentees' Rights |
| Reference | (WIPO, Geneva, 2010) |
| Author(s) | Knoppers B.M., Joly Y. |
| Title | General Problems Related to the Collection and Processing of Health Related Information for Insurance Purposes Including those which are Specific to Predictive Health Data |
| Reference | (Council of Europe, CDBI-CO-GT4 (2010) 6REV) |
| Author(s) | Bubela T., et al., Joly Y. |
| Title | Evidence and Background Information to Inform Canada's Approach to Public Health and Intellectual Property Issues in International Fora |
| Reference | (Health Canada's International Affairs Directorate, 2010) |
| Author(s) | Gold E.R., Bubela T., Carbone J., Gagnon M.-A., Srulovicz T., Joly Y. |
| Title | At the intersection of health and intellectual property: Issues, tools and directions for Health Canada |
| Reference | (Health Canada Bioethics, Innovation and Policy Integration Division, TIP, 2010) |
| Author(s) | Burton P., Fortier I., Knoppers B.M. |
| Title | The Global Emergence of Epidemiological Biobanks: Opportunities and Challenges |
| Reference | Human Genetic Epidemiology: Building the Evidence for Using Genetic Information to Improve Health and Prevent Disease (U.S.: Oxford University Press, 2010) |
| Author(s) | Thorgeirsson T.E., Gudbjartsson D.F., [...] The ENGAGE Consortium (Knoppers B.M.), et al |
| Title | Sequence Variants at CHRNB3-CHRNA6 and CYP2A6 Affect Smoking Behavior |
| Reference | (2010) 42:5 Nature Genetics, 448 |
2009 Open
2009 Close
| Author(s) | Borry P., Howard H.C., Sénécal K., Avard D. |
| Title | Ethics Watch: Direct-to-Consumer Genome Scanning Services. Also for Children? |
| Reference | (2009) 10:1 Nature Reviews Genetics, 8 |
| Author(s) | Avard D., Silverstein T., Sillon G., Joly Y. |
| Title | Researchers' Perceptions of the Ethical Implications of Pharmacogenomics Research with Children |
| Reference | (2009) 12:3 Public Health Genomics, 191 |
| Author(s) | Frank C., [...] Joly Y. et al. |
| Title | Making an Impact: A Preferred Framework and Indicators to Measure Returns on Investment in Health Research |
| Reference | (2008) Canadian Academy of Health Science, Assessment Report, Report of the Panel on the Return on Investments in Health Research, 80 |
| Author(s) | Henk A.M., Stanton-Jean M. |
| Title | The UNESCO Universal Declaration on Bioethics and Human Rights: Background, Principles and Application |
| Reference | UNESCO Publishing, 2009, 370 p. |
| Author(s) | Frank C., [...] Joly Y. et al. |
| Title | Créer un impact: Les indicateurs et approches à privilégier pour mesurer le rendement des investissements consentis en recherche en santé |
| Reference | (2008) Académie canadienne des sciences de la santé, Résumé du panel sur le rendement des investissements consentis en recherche en santé |
| Author(s) | Isasi R.M. |
| Title | Policy Interoperability in Stem Cell Research: Demystifying Harmonization |
| Reference | (2009) 5:2 Stem Cell Rev. and Rep., 108 |
| http://www.springerlink.com/content/l4785q62463n7202/fulltext.pdf |
| Author(s) | Geransar R.M., Einsiedel E.F. , Galipeau J., Isasi R. , Sheremeta L., Knoppers B.M. |
| Title | Catalyzing Umbilical Cord Blood Research in Canada: A Survey of Current Needs and Practices of Principal Investigators |
| Reference | (2009) 31:1 J. Obstet. Gynaecol. Can, 63 |
| Author(s) | Joly Y. |
| Title | L’utilisation des ressources biologiques humaines et le partage des avantages: à la recherche d’un nouvel équilibre |
| Reference | La bioéquité : Bataille autour du partage du vivant (Éditions Autrement, 2009) |
| Author(s) | Avard D., Knoppers B.M. |
| Title | Genomic Medicine: Considerations for Health Professionals and the Public |
| Reference | (2009) 1:2 Genome Medicine, 25.1 |
| Author(s) | Wallace S., Lazor S., Knoppers B.M. |
| Title | Consent and Population Genomics: The Creation of Generic Tools |
| Reference | (2009) 31:2 IRB: Ethics & Human Research, 15 |
| Author(s) | Nycum G., Avard D., Knoppers B.M. |
| Title | Factors Influencing Intrafamilial Communication of Hereditary Breast and Ovarian Cancer Genetic Information |
| Reference | (2009) European Journal of Human Genetics, Advance online publication, 25 March 2009; doi:10.1038/ejhg.2009.33 |
| Author(s) | Sénécal K., Borry P., Howard H.C., Avard D. |
| Title | Les tests génétiques offerts directement aux consommateurs : vue d'ensemble des normes et politiques applicables |
| Reference | (2009) 7:1 GenEdit, 1-14 |
| http://www.humgen.org/int/GE/fr/2009-1.pdf |
| Author(s) | Sénécal K., Borry P., Howard H.C., Avard D. |
| Title | Direct to Consumer Genetic Tests. An Overview of Guidelines and Position Papers |
| Reference | (2009) 7:1 GenEdit, 1-14 |
| http://www.humgen.org/int/GE/en/2009-1.pdf |
| Author(s) | Joly Y. |
| Title | Genetic Research Tools: Recent Trends and Future Outlook |
| Reference | Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009) |
| Author(s) | Avard D., Stanton-Jean M., Woodgate R.L., Pullman D., Saginur R. |
| Title | Research Ethics Boards and Challenges for Public Participation |
| Reference | (2009) 17:2-3 Health Law Review, 66 |
| Author(s) | Knoppers B.M. |
| Title | Genomics and Policymaking: From Static Models to Complex Systems? |
| Reference | (2009) 125 Hum Genet, 375 |
| Author(s) | Knoppers B.M. |
| Title | Biotechnology & Ethics |
| Reference | Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009) |
| Author(s) | Silverstein T., Joly Y., Harmsen E., Knoppers B.M. for the GRID (Gene Regulators in Disease) Project |
| Title | The Commercialization of Genomic Academic Research: Conflicting Interests? |
| Reference | Biotechnology IP & Ethics (Canada: LexisNexis Canada Inc., 2009) |
| Author(s) | Avard D., Bucci L.M., Burgess M.M., Kaye J., Heeney C., Farmer Y., Cambon-Thomsen A. |
| Title | Public Health Genomics (PHG) and Public Participation: Points to Consider |
| Reference | (2009) 5:1 Journal of Public Deliberation, 1 |
| Author(s) | Gold E.R., Knoppers B.M. |
| Title | Biotechnology IP & Ethics |
| Reference | LexisNexis Canada Inc., 2009, 305 p. |
| Author(s) | Isasi R.M., Knoppers B.M. |
| Title | Governing stem cell banks and registries: Emerging issues |
| Reference | (2009) 3:2-3 Stem Cell Res., 96 |
| http://www.ncbi.nlm.nih.gov/pubmed/19586808 |
| Author(s) | Bucci L.M., Stanton-Jean M. |
| Title | Toward a Policy Framework on Nanomedicine: A Canadian Perspective |
| Reference | Novelty or Disguise? Regulation and Policy-making in Nanotechnology (Italy: Neos Edizioni s.r.l., 2009) |
| Author(s) | Tassé A.M., Petit É., Godard B. |
| Title | Differences in Regulatory Frameworks Governing Genetic Laboratories in Four Countries |
| Reference | (2009) 37 Journal of Law, Medicine & Ethics, 351 |
| Author(s) | Knoppers B.M., Laberge C. |
| Title | Return of Accurate and Actionable Results: Yes |
| Reference | (2009) 9:6-7: AJOB, 107 |
| Author(s) | Nycum G., Knoppers B.M., Avard D. |
| Title | Intra-familial Obligations to Communicate Genetic Risk Information: What Foundations? What Forms? |
| Reference | (2009) 3 McGill Journal of Law and Health, 21 |
| Author(s) | Grégoire G., Alemdjrodo R., Chagnon A. |
| Title | La discrimination génétique et l'assurance-vie : les mesures de protection actuelles suffisent-elles? |
| Reference | (2009) 14:1 Lex Electronica, 1 |
| Author(s) | Samuël J., Ries N.M., Malkin D., Knoppers B.M. |
| Title | Biobanks and Children: Comparative International Policies |
| Reference | Paediatric Research in Canada (Montreal: Les Éditions Thémis, 2009), pp. 103-127 |
| Author(s) | Samuël J., Knoppers B.M., Avard D. |
| Title | Research Involving Children: An Analysis of International and Canadian Norms |
| Reference | Paediatric Research in Canada (Montreal: Les Éditions Thémis, 2009), pp. 1-32. |
| Author(s) | Sénécal K., Samuël J., Avard D. |
| Title | Research and the Assent of the Child: Towards Harmonization? |
| Reference | Paediatric Research in Canada (Montreal: Les Éditions Thémis, 2009), pp. 33-70. |
| Author(s) | Avard D., Samuël J., Knoppers B.M. (eds.) |
| Title | Paediatric Research in Canada |
| Reference | Paediatric Research in Canada (Montreal: Les Éditions Thémis, 2009) 270pp |
| Author(s) | Rothstein M.A., Joly Y. |
| Title | Genetic Information and Insurance Underwriting: Contemporary Issues and Approaches in the Global Economy |
| Reference | in Atkinson P., Glasner P. & Lock M., eds., The Handbook of Genetics & Society: Mapping the New Genomic Era (London and New York: Routledge, 2009), Chapter 10, pp. 127-144 |
| Author(s) | Bouffard C., Viville S., Knoppers B.M. |
| Title | Genetic diagnosis of embryos: Clear explanation, not rhetoric, is needed |
| Reference |
| Author(s) | Caulfield T., Zarzeczny A., McCormick J., Bubela T., Joly Y., Isasi R. et al |
| Title | International stem cell environments: A world of difference |
| Reference | (2009) Nature Reports Stem Cells, doi:10.1038/stemcells.2009.61 |
| Author(s) | Caulfield T., Zarzeczny A., McCormick J., Joly Y., Isasi R. et al |
| Title | The Stem Cell Research Environment: A Patchwork of Patchworks |
| Reference | (2009) 5:2 Stem Cell Rev. and Rep., 82 |
| Author(s) | Gurwitz D., Fortier I., Lunshof J.E., Knoppers B.M. |
| Title | Children and population biobanks |
| Reference | (2009) 325 Science, 818-819 |
| http://www.sciencemag.org/cgi/content/short/325/5942/818 |
| Author(s) | Knoppers B.M., Bordet S., Isasi R. |
| Title | The Human Embryo: Ethical and Legal Aspects |
| Reference | Human Embryogenesis: Methods and Protocols (New York: Humana Press, 2009) |
| Author(s) | Costea I., Isasi R., Knoppers B.M., Lillicrap D. |
| Title | Haemophilia gene therapy: the patients' perspective |
| Reference | (2009) 15:5 Haemophilia, 1159 |
| Author(s) | P3G Consortium, Church G., Heeney C., Hawkins N., de Vries J., Boddington P., Kaye J., Bobrow M., Weir B. |
| Title | Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection |
| Reference | (2009) 5:10 Plos Genetics, 1 |
| Author(s) | Isasi, R.M. |
| Title | Registration of Stem Cell-Based Clinical Trials: A Scientific and Ethical Imperative |
| Reference | World Stem Cell Report 2009 (Florida: Genetics Policy Institute, 2009) |
| Author(s) | Bucci L, Stanton-Jean M and Knoppers BM |
| Title | A Risk Governance Model for Nanotechnology: A Review of International Guidelines and Policy Statements |
| Reference | (2009) 7:2 GenEdit, 1-6 |
| http://www.humgen.org/int/GE/en/2009-2.pdf |
| Author(s) | Bucci L, Stanton-Jean M et Knoppers BM |
| Title | Modèle de gouvernance du risque en matière de nanotechnologies:Étude des lignes de conduite et des énoncés de politiques internationales |
| Reference | (2009) 7:2 GenEdit, 1-6 |
| http://www.humgen.org/int/GE/fr/2009-2.pdf |
| Author(s) | Lévesque E. |
| Title | Les banques de matériel biologique utilisées en recherche : préférer une évaluation globale afin de décider du meilleur moyen de protéger la confidentialité |
| Reference | (2009) 43:3 R.J.T., 773-800 |
| Author(s) | Kirby É., Lévesque E., Avard D. |
| Title | Reducing Fears of Participating in Research Involving Genetic Testing |
| Reference | (2009) 1 : 6 MIREC Newsletter 8 |
| Author(s) | Zarzeczny A., Scott C., Hyun I., Bennett J., Chandler J., Charge S., Heine H., Isasi R., Kato K., Lovell-Badge R., McNagny K., Pei D., Rossant J., Surani A., Taylor P.L., Ogbogu U., Caulfield T. |
| Title | iPS Cells: Mapping the Policy Issues |
| Reference | (2009) 139:6 Cell, 1032 |
| http://download.cell.com/pdf/PIIS0092867409014974.pdf |
| Author(s) | Tassé A.M., Godard, B. |
| Title | Analyse éthique de l’internationalisation des services de laboratoires génétiques |
| Reference | (2009) 6:3 Éthique & Santé 152 |
| http://www.em-consulte.com/article/228211 |
| Author(s) | Tassé A.M., Godard B. |
| Title | L'internationalisation des services génétiques: Analyse comparative des normes de gouvernance canadiennes, américaines, britanniques et australiennes |
| Reference | L'internationalisation des services génétiques: Analyse comparative des normes de gouvernance canadiennes, américaines, britanniques et australiennes (Montréal: Thémis, 2009) |
| Author(s) | Joly Y. |
| Title | La biotechnology ouverte - Bilan de la rencontre de deux révolutions |
| Reference | (2009) 25 : 11 Médecine Sciences 957 - 961 |
| Author(s) | Knoppers B.M., Avard D. |
| Title | 'Principled' personalized medicine? |
| Reference | (2009) 6:6 Personalized Medicine, 663 |
| Author(s) | Knoppers B.M., Kharaboyan L. |
| Title | "Deconstructing" Biobank Communication of Results |
| Reference | (2009) 6:3 SCRIPTed, 677 |
| Author(s) | Knoppers B.M. |
| Title | Challenges to Ethics Review in Health Research |
| Reference | (2009) 17:2-3 Health Law Review, 47 |
| Author(s) | Fortin S., Knoppers B.M. |
| Title | Secondary Uses of Personal Data for Population Research |
| Reference | (2009) 5:1 Genomics, Society and Policy, 60 |
| Author(s) | Kirby E., Lévesque E., Avard D. |
| Title | MIREC’s Biobank - Ethical Considerations |
| Reference | (2009) 5 MIREC Newsletter, 10 |
| Author(s) | Bordet S., Knoppers B.M. |
| Title | L'humain, l'humanité et les biotechnologies |
| Reference | L'humain, l'humanité et le progrès scientifique (eds. Hervé C, Jean MS, Molinari PA, Grimaud M-A , Laforêt E) (France: Dalloz, 2009) |
| Author(s) | Bédard K., Wallace S., Lazor S., Knoppers B.M. |
| Title | Potential Conflicts in Governance Mechanisms used in Population Biobanks |
| Reference | in Kaye J. & Stranger M. (eds.) Principles and Practice in Biobank Governance (United Kingdom: Ashgate, 2009) |
| Author(s) | Isasi R.M., Knoppers B.M. |
| Title | Towards Commonality? Policy Approaches to Human Embryonic Stem Cell Research in Europe |
| Reference | in Plomer A. & Torremans P. (eds.) Embryonic Stem Cell Patents: European Law and Ethics (London: Oxford University Press, 2010) |
| Author(s) | Knoppers B.M. |
| Title | Genetics: From Fate to Fortune-Telling |
| Reference | (Fall 2009) WOA Alumni Magazine, 15 |
| http://issuu.com/faculty_of_arts/docs/work_20of_20arts_fall_202009_online |
| Author(s) | Bucci L, Stanton-Jean M, Knoppers BM |
| Title | Un modelo de gobernabilidad de los riesgos para la nanotecnología: Una revisión de guías y políticas internacionales |
| Reference | (2009) 7:2 GenEdit, 1-7 |
| http://www.humgen.org/int/GE/es/2009-2.pdf |
| Author(s) | Lévesque E., Fraser W., Knoppers B.M. |
| Title | Le consentement à la recherche: les situations d'exception |
| Reference | (2009) 7:3 GenEdit 1-13 |
| http://www.humgen.org/int/GE/fr/2009-3.pdf |
| Author(s) | Lévesque E., Fraser W., Knoppers B.M. |
| Title | Consent to Research: Exceptional Situations |
| Reference | (2009) 7:3 GenEdit 1-12 |
| http://www.humgen.org/int/GE/en/2009-3.pdf |
| Author(s) | Knoppers B.M., Abdul-Rahman (Zawati) M.H. |
| Title | Health Privacy in Genetic Research: Populations and Persons |
| Reference | (2009) 28:2 Politics and the Life Sciences, 99 |
| Author(s) | Tazzite A., Roky R., Avard D. |
| Title | Les implications éthiques de la conservation des échantillons biologiques |
| Reference | (2009) 2:3 Journal international de bioéthique, 87 |
| Author(s) | International Stem Cell Banking Initiative |
| Title | Consensus guidance for banking and supply of human embryonic stem cell lines for research purposes |
| Reference | Stem Cell Rev. 2009 Dec;5(4):301-14. PubMed PMID: 20016957. |
| Author(s) | Senecal K., Borry P., Howard H.C., Avard D. |
| Title | Pruebas Genéticas Directas al Consumidor: Visión General de las Normas y Políticas Aplicables |
| Reference | (2009) 7:1 GenEdit, 1-14 |
| http://www.humgen.org/int/GE/es/2009-1.pdf |
| Author(s) | Levesque E., Fraser W., Knoppers B.M. |
| Title | Consentimiento para la Investigación: Situaciones Excepcionales |
| Reference | (2009) 7:3 GenEdit 1-12 |
| http://www.humgen.org/int/GE/es/2009-3.pdf |
| Author(s) | Birney E., [...] Joly Y., et al. |
| Title | Prepulication Data Sharing |
| Reference | (2009)461:7261 Nature, 168 |
| Author(s) | Avard D., Borry P., Laberge C.M. |
| Title | Newborn Screening Research: Current Challenges |
| Reference | Pediatric Research in Canada (Montreal: Les Editions Themis, 2009) |
| Author(s) | Joly Y. |
| Title | Intellectual Property and the "Right" to Health in the Age of Biomedicine |
| Reference | Séminaire d’actualité de droit medical (Bordeaux : Les Études Hospitalières, 2009) |
| Author(s) | Hemmer M., Joly Y., Glebov L., Bass M., Richardson M. |
| Title | Volume Bragg Grating assisted broadband tunability and spectral narrowing of TI:Sapphire oscillators |
| Reference | (2009) 17:10 Optics Express, 8212 |
| Author(s) | P3G Consortium (Knoppers B.M.), Church G., Heeney C., Hawkins N., de Vries J., Boddington P., Kaye J., Bobrow M., Weir B. |
| Title | Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection |
| Reference | (2009) 5:10 PLoS Genetics, 1 |
| Author(s) | Knoppers B.M., Joly Y. |
| Title | General Problems Related to the Collection and Processing of Health Related Information for Insurance Purposes Including those which are Specific to predictive Health Data |
| Reference | (Council of Europe, 2009) |
| Author(s) | Taupitz J., Bader M., Knoppers B.M., et al |
| Title | Summary, Conclusions and Recommendations |
| Reference | Chimbrids-Chimeras and Hybrids in Comparative European and International Research (Berlin: Springer, 2009) |
| Author(s) | Birney E., Hudson T.J., [...] Knoppers B.M., et al |
| Title | Prepublication Data Sharing |
| Reference | (2009) 461:7261 Nature, 168 |
2008 Open
2008 Close
| Author(s) | Isasi R., Nguyen T.M. |
| Title | The Rationale for a Registry of Clinical Trials Involving Human Stem Cell Therapies |
| Reference | (2008) 16:2 Health Law Review, 56 |
| Author(s) | Knoppers B.M., Saginur M. |
| Title | Bio-Banking |
| Reference | in The Cambridge Textbook of Bioethics (Cambridge: Cambridge University Press, 2008) |
| Author(s) | Lacroix M., Nycum G., Godard B., Knoppers B.M. |
| Title | Should Physicians Warn Patients' Relatives of Genetic Risks? |
| Reference | (2008) 178:5 CMAJ, 593 |
| Author(s) | Farmer Y., Avard D. |
| Title | The Genetics of Type 2 Diabetes - a Look at the Scientific Advances of the DGDG Project |
| Reference | (2008) 53:1 Diabetes Voice, 31 |
| Author(s) | Potter B.K., Avard D., Wilson B.J. |
| Title | Newborn Blood Spot Screening in Four Countries: Stakeholder Involvement |
| Reference | (2008) 29 Journal of Public Health Policy, 121 |
| Author(s) | Avard D., Grégoire G., Jean M.S. |
| Title | Involving the Public in Public Health Genomics: A Review of Guidelines and Policy Statements |
| Reference | (2008) 6:1 GenEdit, 1-9 |
| http://www.humgen.org/int/GE/en/2008-1.pdf |
| Author(s) | Avard D., Grégoire G., Jean M.S. |
| Title | La participation du public dans la génomique en santé publique: Examen des lignes directrices et des politiques |
| Reference | (2008) 6:1 GenEdit, 1-10 |
| http://www.humgen.org/int/GE/fr/2008-1.pdf |
| Author(s) | Bombard, Y., Penziner E, Suchowersky O, Guttman M, Paulsen JS, Bottorff JL, Hayden MR. |
| Title | Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease |
| Reference | (2008)European journal of human genetics : EJHG. 16(3), 279-89 |
| http://www.ncbi.nlm.nih.gov/pubmed/17957229?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum |
| Author(s) | Cohen C.B., Brandhorst B., Nagy A., Leader A., Dickens B., Isasi R.M., Evans D., Knoppers B.M. |
| Title | The use of fresh embryos in stem cell research: ethical and policy issues |
| Reference | (2008) 2:5 Cell Stem Cell, 416 |
| Author(s) | Wallace S., Bédard K., Kent A. et Knoppers B.M. |
| Title | Les mécanismes de gouvernance et les biobanques populationnelles : Établir un cadre de confiance |
| Reference | (2008) 6:2 GenEdit, 1-11 |
| http://www.humgen.org/int/GE/fr/2008-2.pdf |
| Author(s) | Wallace S., Bédard K., Kent A. and Knoppers B.M. |
| Title | Governance Mechanisms and Population Biobanks: Building a Framework for Trust |
| Reference | (2008) 6:2 GenEdit, 1-11 |
| http://www.humgen.org/int/GE/en/2008-2.pdf |
| Author(s) | Knoppers B.M. et Joly Y., dir. |
| Title | La santé et le bien commun |
| Reference | (Montréal: Les Éditions Thémis - Collection Droit, biotechnologie et société, 2008) |
| Author(s) | Knoppers B.M., Abdul-Rahman (Zawati) M.H. |
| Title | Biobanks in the Literature |
| Reference | in Elger B., Capron A., et al (eds), Ethical Issues in Governing Biobanks: Global Perspectives, Ch. 2 (UK: Ashgate Publishing Ltd, 2008) |
| Author(s) | Knoppers B.M., Joly Y. |
| Title | La connaissance du génome : un instrument au service de l'humanité? |
| Reference | dans B.M. Knoppers et Y. Joly, dir., La santé et le bien commun, (Montréal: Les Éditions Thémis - Collection Droit, biotechnologie et société, 2008) 249 |
| Author(s) | Samuël J. |
| Title | Les médecins et le sport : les affres du dopage sportif |
| Reference | dans Duguet, A.-M., Filippi I. et Herveg J., dir., Évolution récente des actions en responsabilité médicale en France : comparaison avec l'étranger, (Bordeaux: Les Études hospitalières, 2008) |
| Author(s) | Julie Samuël J., Ries N.M.,Malkin D., Knoppers B.M. |
| Title | Biobanques et études longitudinales: Où sont les enfants? |
| Reference | (2008) 6:3 GenEdit, 1-9 |
| http://www.humgen.org/int/GE/fr/2008-3.pdf |
| Author(s) | Samuël J., Ries N.M., Malkin D., Knoppers B.M. |
| Title | Biobanks and Longitudinal Studies: Where Are the Children? |
| Reference | (2008) 6:3 GenEdit, 1-8 |
| http://www.humgen.org/int/GE/en/2008-3.pdf |
| Author(s) | Knoppers B.M. |
| Title | Of biobanks: medical data and population genetics: whither identifiability? |
| Reference | La protection des données médicales. Les défis du XXIe siècle/The protection of medical data. Challenges of the 21st century, L.G.D.J., France, 2008, 79-88 |
| Author(s) | Knoppers B.M., Brand A.M. |
| Title | From Community Genetics to Public Health Genomics - What's in a Name? |
| Reference | (2008) 12 Public Health Genomics, 1-3 |
| Author(s) | Joly Y., Sillon G., Silverstein T., Krajinovic M., Avard D. |
| Title | Pharmacogenomics: Don't Forget the Children |
| Reference | (2008) 6 Current Pharmacogenomics and Personalized Medicine, 77-84 |
| Author(s) | Potter B.K., Avard D., Entwistle V., Kennedy C., Chakraborty P., McGuire M., Wilson B.J. |
| Title | Ethical, Legal, and Social Issues in Health Technology Assessment for Prenatal/Preconceptional and Newborn Screening: A Workshop Report |
| Reference | (2009) 12:1 Public Health Genomics, 4-10 |
| Author(s) | Potter B.K., Avard D., Graham I.D., Entwistle V.A., Caulfield T.A., Chakraborty P., Kennedy C., McGuire M., Griener G.G., Montgomery M., Wells G.A., Wilson B.J. |
| Title | Guidance for considering ethical, legal, and social issues in health technology assessment: Application to genetic screening |
| Reference | (2008) 24:4 International Journal of Technology Assessment in Health Care, 412-422 |
| Author(s) | Avard D., Joly Y. |
| Title | Improved Understanding of Genetic and Genomic Influences on Drug Disposition and Action: Implications for Children |
| Reference | (2008) 10:5 Pediatr Drugs, 275-278 |
| Author(s) | Avard D., Grégoire G., Coly B., Bucci L.M., Farmer Y. |
| Title | La participation du public dans la santé publique : l'implication des communautés culturelles dans le dépistage des maladies héréditaires |
| Reference | (2008) 39:3 Pratiques et Organisation des Soins, 231-242 |
| Author(s) | Nycum G., Avard D., Knoppers B.M. |
| Title | Familial communication of genetic information: experiences and complexities |
| Reference | (2008) 12:2 Network News, 18-20 |
| Author(s) | Tassé A.M., Godard B. |
| Title | L'encadrement législatif de la vente directe des tests génétiques et le système de santé québécois |
| Reference | (2007) 15 H.L.J., 443 |
| Author(s) | Petit É., Tassé A.M., Godard B. |
| Title | An Empirical Analysis of the Legal Frameworks Governing Genetic Services Labs in Canadian Provinces |
| Reference | (2008) 16:3 H.L.R. |
| Author(s) | Stanton-Jean M., Callu M.F. |
| Title | Participation des usagers et pratiques cliniques |
| Reference | (2008) 3 Pratiques et Organisation des Soins |
| Author(s) | Lévesque E. |
| Title | L’expérimentation sur les majeurs inaptes : de nouvelles pistes de solution |
| Reference | in Barreau du Québec, Développements récents, Obligations et recours contre un curateur, tuteur ou mandataire défaillant, vol. 283 (Cowansville: Éditions Yvon Blais, 2008), p. 43 |
| http://www.caij.qc.ca/doctrine/developpements_recents/283/78/index.html |
| Author(s) | B. M. Knoppers, F. D. Legault and P. Burton |
| Title | The Public Population Project in Genomics (P3G): a Proof of Concept? |
| Reference | European Journal of Human Genetics (2008), Vol. 16, 664-665 |
| http://www.nature.com/ejhg/journal/v16/n6/pdf/ejhg200855a.pdf |
| Author(s) | Joly Y. |
| Title | Le transfert des technologies, vers une approche plus personnalisée |
| Reference | Découvrons (Genome Québec, Automne 2008) |
| Author(s) | Joly Y. |
| Title | The Transfer of Technologies: Towards a Personalized Approach |
| Reference | Discover (Genome Quebec, 2008) |
| Author(s) | Samuël J. |
| Title | Les médecins et le dopage sportif |
| Reference | (Montréal: Les Éditions Thémis - Collection Droit, biotechnologie et société, 2008) |
| Author(s) | Hervé C., Jean S. M, Molinari P.A., Grimaud M.A., Laforêt E. eds |
| Title | Généticisation et responsabilités |
| Reference |
| Author(s) | Avard D., Grégoire G., Jean M.S. |
| Title | La Participación del Público en la Genómica en Salud Pública: Una Revisión de Lineamientos Y Políticas |
| Reference | (2008) 6:1 GenEdit, 1-8 |
| http://www.humgen.org/int/GE/es/2008-1.pdf |
| Author(s) | Sillon G., Joly Y., Feldman S., Avard D. |
| Title | An Ethical and Legal Overview of Pharmacogenomics: Perspectives and Issues |
| Reference | (2008) 27(4) Med Law, 843-857 |
| Author(s) | Wallace S., Bédard K., Kent A., Knoppers B.M. |
| Title | Mecanismos de Gobernabiliad Y Biobancos Poblacionales: Desarrollando Un Marco de Confianza |
| Reference | (2008) 6:2 GenEdit, 1-12 |
| http://www.humgen.org/int/GE/es/2008-2.pdf |
| Author(s) | Samuël J., Ries N., Malkin D., Knoppers B.M. |
| Title | Biobancos Y Estudios Longitudinales: ¿Dónde Están Los Niños? |
| Reference | (2008) 6:3 GenEdit, 1-10 |
| http://www.humgen.org/int/GE/es/2008-3.pdf |
| Author(s) | Joly, Y., Pham, C., Shorno, D., Knoppers, B.M. |
| Title | Down the Rabbit Hole: Technology Transfer in the Field of Stem Cell Research |
| Reference | (2008) 47 Revista da Faculta de Dereito de Universidade Federal do Parana 101 |
| Author(s) | Howard HC, Borry P. |
| Title | Direct-to-consumer genetic testing: more questions than benefits? |
| Reference | (2008) 5:4 Personalized Medicine 317 |
| Author(s) | Borry P., Howard H.C. |
| Title | DTC genetic services: a look across the pond |
| Reference | (2008) 8:6 The American Journal of Bioethics 14 |
| Author(s) | Joly Y. |
| Title | Open Source Biotechnology: Refocusing the Debate |
| Reference | Biotechnology a Legal Approach Punjagutta: The Icfai University Press, 2008) |
| Author(s) | Dorval M., Bouchard K., Maunsell E., Plante M., Chiquette J., Camden S., Dugas M.J., Simard J., INHERIT BRCAs (Knoppers B.M., et al) |
| Title | Health Behaviors and Psychological Distress in Women Initiating BRC1/2 Genetic Testing: Comparison with Control Population |
| Reference | (2008) 17:4 Journal of Genetic Counseling, 314 |
| Author(s) | Caulfield T., McGuire A.L., Cho M., Buchanan J.A., Burgess M.M., Danilczyk U., Diaz C.M., Fryer-Edwards K., Green S.K., Hodosh E.T., Kaye J., Kedes L., Knoppers B.M., Lemmens T., Meslin E.M., Murphy J., Nussbaum R.L., Otlowski M., Pullman D., Ray P.N., Sugarman J., Timmons M. |
| Title | Research Ethics Recommendations for Whole-Genome Research: Consensus Statement |
| Reference | (2008) 6:3 PloS Biology, 0430 |
2007 Open
2007 Close
| Author(s) | Simard J., Dumont D., Moisan A.M., Gaborieau V., Vezina H., Durocher F., Chiquette J., Plante M., Avard D., Bessette P., Brousseau C., Dorval M., Godard B., Houde L., Joly Y., Lajoie M.A., Leblanc G., Lepine J., Lespernace B., et al., Knoppers B.M. |
| Title | Evaluation of BRCA1 and BRCA2 Mutation Prevalence, Risk Prediction Models and a Multi-Step Testing Approach in French-Canadian High-Risk Breast and Ovarian Cancer Families |
| Reference | (2007) 44:2 J. Med. Genet., 107 |
| http://jmg.bmjjournals.com/cgi/rapidpdf/jmg.2006.044388v1 |
| Author(s) | Bordet S., Kharaboyan L., Lebrun A. |
| Title | Umbilical Cord Blood Banking |
| Reference | (2007) 5:1 GenEdit, 1-7 |
| http://www.humgen.org/int/GE/en/2007-1.pdf |
| Author(s) | Bordet S., Kharaboyan L., Lebrun A. |
| Title | Conservation du sang de cordon ombilical |
| Reference | (2007-2008) 5:1 GenEdit, 1-7 |
| http://www.humgen.org/int/GE/fr/2007-1.pdf |
| Author(s) | Bordet S., Feldman S., Knoppers B.M. |
| Title | Legal aspects of animal-human combinations in Canada |
| Reference | (2007) 1:1 McGill Health Law Publication, 83 |
| http://healthlaw.mcgill.ca/ |
| Author(s) | Knoppers B.M., Joly Y. |
| Title | Our Social Genome? |
| Reference | (2007) 25:7 Trends in Biotechnology, 284 |
| http://www.sciencedirect.com |
| Author(s) | Sénécal K. |
| Title | Réflexion sur la thérapie génique germinale: aspects juridiques et éthiques |
| Reference | (Montréal: Les Éditions Thémis, 2007) |
| Author(s) | Knoppers B.M., Abdul-Rahman (Zawati) M., Bédard K. |
| Title | Genomic Databases and International Collaboration |
| Reference | (2007) 18:2 King's Law Journal, 291 |
| Author(s) | Joly Y. |
| Title | Open Source Approaches in Biotechnology: Utopia Revisited |
| Reference | (2007) 59:2 Maine Law Review, 386 |
| http://papers.ssrn.com/sol3/papers.cfm?abstract_id=943011 |
| Author(s) | Caulfield T., Ogbogu U., Isasi R. |
| Title | Informed Consent in Embryonic Stem Cell Research: Are We Following Basic Principles |
| Reference | (2007) CMAJ 176:12, 1722-1725 |
| Author(s) | For the International Stem Cell Forum Ethics Working Party: Knoppers B.M., Revel M., Richardson G., Kure J., Lotjonen S., Isasi R., Mauron A., Wahlstrom J., Rager B., Peng P.L.H. |
| Title | Oocyte Donation for Stem Cell Research |
| Reference | (2007) Science 316, 368-369 |
| Author(s) | Godard B., Marshall J., Laberge C. |
| Title | Community Engagement in Genetic Research: Results of the First Public Consultation for the Quebec CARTaGENE Project |
| Reference | (2007) 10:3 Community Genet., 147 |
| Author(s) | Avard D., Vallance H., Greenberg C., Potter B. |
| Title | Newborn Screening by Tandem Mass Spectrometry |
| Reference | (2007) 98:4, Revue canadienne de santé publique, 284-286 |
| Author(s) | Lévesque E. |
| Title | L'accès aux informations de santé à des fins de recherche sans le consentement des patients : mise en parallèle des modèles québécois et français |
| Reference | in Duguet A.-M., Herveg J., Filippi I. (eds.), Séminaire d'actualité du droit médical - Dossier médical et données médicales de santé - Protection de la confidentialité, conditions d'accès, échanges pour les soins et les recherches (Bordeaux: Les Études Hospitalières, 2007), 207 |
| Author(s) | Phillips M.S., Joly Y., Silverstein T., Avard D. |
| Title | Consent in Pharmacogenomic Research |
| Reference | (2007) 5:2 GenEdit, 1-9 |
| http://www.humgen.org/int/GE/en/2007-5.pdf |
| Author(s) | Phillips M.S., Joly Y., Silverstein T., Avard D. |
| Title | Le consentement à la recherche en pharmacogénomique |
| Reference | (2007) 5:2 GenEdit, 1-10 |
| http://www.humgen.org/int/GE/fr/2007-5.pdf |
| Author(s) | Isasi R.M., Knoppers B.M. |
| Title | Monetary Payments for the Procurement of Oocytes for Stem Cell Research: In Search of Ethical and Political Consistency |
| Reference | (2007) 1 Stem Cell Research, 37 |
| Author(s) | Sheremeta L., Knoppers B.M. |
| Title | Beyond the Rhetoric: Population Genetics and Benefit-Sharing |
| Reference | Accessing and Sharing the Benefits of the Genomics Revolution (Germany: Springer, 2007) |
| Author(s) | Caulfield T., Ogbogu O., Knoppers B.M., Isasi R.M., et. al. |
| Title | Stem Cell Research Ethics: Consensus Statement on Emerging Issues |
| Reference | (2007) 29:10 J. Obstet. Gynaecol. Can. 2007, 843 |
| Author(s) | Kharaboyan L., Knoppers B.M., Avard D., Nisker J. |
| Title | Understanding Umbilical Cord Blood Banking: What Women Need to Know Before Deciding |
| Reference | (2007) 17:5 Women’s Health Issues, 277 |
| Author(s) | Joly Y., Wahnon F., Knoppers B.M. |
| Title | Impact of the Commercialization of Biotechnology Research on the Communication of Research Results: North American Perspective |
| Reference | (2007) 8:1 Harvard Health Policy Review, 71 |
| Author(s) | Joly Y., Nycum G. |
| Title | Currents in Contemporary Ethics. The Tuberculosis Scare in Retrospect |
| Reference | (2007) 35:4 Journal of Law, Medicine & Ethics, 734 |
| Author(s) | Avard D., Simard J., Horsman D., Wilson B.J., Meschino W.S., Kim Sing C., Plante M., Eisen A., Howley H.E. |
| Title | Variations in rates: why we need clinical management recommendations |
| Reference | (2007) 1:2 Open Medicine, Letter |
| Author(s) | Horsman D., Wilson B.J., Avard D., Meschino W.S., Kim Sing C., Plante M., Eisen A., Howley H.E., Simard J. |
| Title | Clinical Management Recommendations for Surveillance and Risk-Reduction Strategies for Hereditary Breast and Ovarian Cancer Among Individuals Carrying a Deleterious BRCA1 or BRCA2 Mutation |
| Reference | (2007) 29:1 Journal of the Society of Obstetricians and Gyneacologists of Canada, 45 |
| Author(s) | Day B., Langlois R., Tremblay M., Knoppers B.M. |
| Title | Canadian Health Measures Survey: Ethical, Legal and Social Issues |
| Reference | (2007) 18 Statistics Canada, Supplement to Health Reports, 37 |
| Author(s) | Bucci L.M., Knoppers B.M. |
| Title | Toward a Canadian Policy Framework on Nanomedicine: Lessons from Reproductive Technologies |
| Reference | (2007) Diritto pubblico comparato ed Europeo, 2007 - IV, 1676 |
| Author(s) | Bombard Y, Penziner E, Decolongon J, Klimek ML, Creighton S, Suchowersky O, Guttman M, Paulsen JS, Bottorff JL, Hayden MR. |
| Title | Managing genetic discrimination: strategies used by individuals found to have the Huntington disease mutation |
| Reference | (2007) Clinical genetics 71(3), 220-31 |
| http://www.ncbi.nlm.nih.gov/pubmed/17309644?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum |
| Author(s) | Phillips M.S., Joly Y., Silverstein T., Avard D. |
| Title | Consentimiento en la Investigación Farmacogenómica |
| Reference | (2007) 5:2 GenEdit, 1-10 |
| http://www.humgen.org/int/GE/es/2007-2.pdf |
| Author(s) | Joly Y. |
| Title | Francesco Francioni, Dir., Biotechnology and International Human Rights, Oxford, Hart 2007 |
| Reference | (2007) 20.1 Revue quebecoise de droit international, 485 |
| Author(s) | Joly Y. |
| Title | L’accès à l’information génétique contenu dans le dossier médical par les assureurs sur la vie : un besoin de repositionner le débat |
| Reference | Séminaire d’actualité de droit médical (Bordeaux : Les Études Hospitalières, 2007) |
| Author(s) | Cambon-Thomsen A., Rial-Sebbag E., Knoppers B.M. |
| Title | Trends in Ethical and Legal Frameworks for the Use of Human Biobanks |
| Reference | (2007) 30:2 Eur Resp J, 373 |
2006 Open
2006 Close
| Author(s) | Clow CL, Fraser FC, Laberge C, Scriver CR |
| Title | On the application of knowledge to the patient with genetic disease |
| Reference | (1973) 9 Prog Med Genet., 159 |
| Author(s) | Godard B |
| Title | De la clandestinité a l'impasse: étude de la problématisation de l' avortement au Canada de 1950 a 1991 |
| Reference | De la clandestinité a l'impasse: étude de la problématisation de l' avortement au Canada de 1950 a 1991 (Université de Montréal, 1992) |
| Author(s) | Joly Y., Knoppers B.M. |
| Title | Pharmacogenomic Data Sample Collection and Storage: Ethical issues and Policy Approaches |
| Reference | (2006) 7:2 Pharmacogenomics, 219 |
| Author(s) | Chassigneux C., Trudel P., Knoppers B.M. |
| Title | L'encadrement juridique du traitement informatisé des données relatives à la santé : perspective europeo-canadienne |
| Reference | (2006) 4:1 GenEdit, 1-8 |
| http://www.humgen.org/int/GE/fr/2006-1.pdf |
| Author(s) | Lévesque E., Knoppers B.M., Avard D. |
| Title | La protection de l'information génétique dans le domaine médical au Québec: principe général de confidentialité et questions soulevées par les dispositions d'exception |
| Reference | (2005-2006) 36:1-2 Revue de droit de l'Université de Sherbrooke, 101 |
| Author(s) | S. Jean M. |
| Title | L'UNESCO adopte la Déclaration universelle sur la bioéthique |
| Reference | (2006) 46 Les Cahiers du CCNE, 59 |
| Author(s) | Godard B., Knoppers B.M. |
| Title | Emerging Duties Re: Professional Disclosure |
| Reference | in Sharpe N.F. and Carter R.F. (eds), Genetic Testing - Care, Consent, and Liability (Hoboken: Wiley-Liss, 2006), 409 |
| Author(s) | Avard D., Bridge P., Bucci L.M., Chiquette J., Dorval M., Durocher F., Easton D., Godard B., Goldgar D., Knoppers B.M., Laframboise R., Lesperance B., Plante M., Tavtigian S.V., Vezina H., Wilson B., Simard J., INHERIT BRCAs |
| Title | Partnering in Oncogenetic Research - The INHERIT BRCAs Experience: Opportunities and Challenges |
| Reference | (2006) 5:1 Familial Cancer, 3-13 |
| Author(s) | Doucet H., Gaudreau E., Grimaud M.A. (dirs) |
| Title | Éthique et recherche qualitative dans le secteur de la santé : échanges sur les défis |
| Reference | (Montréal: ACFAS, 2006) |
| Author(s) | Grimaud, M.A., Doucet, H. |
| Title | Introduction |
| Reference | dans Doucet, H., Gaudreau, E. et Grimaud, M.A. (dirs) Éthique et recherche qualitative dans le secteur de la santé: Échange sur les défis (Montréal: ACFAS, 2006) |
| Author(s) | Chassigneux C., Trudel P., Knoppers B.M. |
| Title | The Legal Framing of Computerized Processing of Health Data: A European and Canadian Perspective |
| Reference | (2006) 4:1 GenEdit, 1-8 |
| http://www.humgen.org/int/GE/en/2006-1.pdf |
| Author(s) | Mykitiuk R., Lacroix M., Turnham S. |
| Title | Prenatal Diagnosis and Preimplantation Genetic Diagnosis: Legal and Ethical Issues |
| Reference | in Sharpe N.F. and Carter R.F. (eds), Genetic Testing: Care, Consent and Liability (Hoboken: Wiley-Liss, 2006), 189 |
| Author(s) | Godard B., Hurlimann T., Letendre M., Egalité N., INHERIT BRCAs |
| Title | Guidelines for Disclosing Genetic Information to Family Members: From Development to Use |
| Reference | (2006) 5:1 Familial Cancer, 103 |
| Author(s) | Hervé C., Knoppers B.M., Molinari P.A., Moutel G., Grimaud M.-A. |
| Title | Éthique de la recherche et santé publique: où en est-on ? |
| Reference | (Paris: Dalloz, 2006) |
| Author(s) | The International Stem Cell Forum Ethics Working Party: Knoppers B.M., Richardson G., Lee E.H., Kure J., de Wert G., Ameisen J.C., Lötjönen L., Breen K., Isasi R., Mauron A., Murray T., Wahlström J. |
| Title | Ethics Issues in Stem Cell Research |
| Reference | (2006) 312:5772 Science, 366 |
| Author(s) | Isasi R., Knoppers B.M. |
| Title | Mind the Gap: Policy Approaches to Embryonic Stem Cell and Cloning Research in 50 Countries |
| Reference | (2006) 13 European Journal of Health Law, 9 |
| Author(s) | Lévesque E., Petit E. |
| Title | L’encadrement juridique de la recherche en génétique au Québec |
| Reference | dans Raymond D. Lambert et Maria DeKoninck (dir.), La conduite responsable de la recherche. Les cadres normatifs (Québec: Faculté de médecine, Université Laval, 2006) |
| http://www.cours.fmed.ulaval.ca/a05/eth64841/table-des-matieres/la-recherche-engenetique/chapitre-14/ |
| Author(s) | Knoppers B.M., Saginur M., Cash H. |
| Title | Ethical Issues in Secondary Uses of Human Biological Materials from Mass Disasters |
| Reference | (2006) 34:2, Journal of Law, Medicine & Ethics, 352 |
| Author(s) | Joly Y. |
| Title | Life Insurers' Access to Genetic Information: A Way Out of the Stalemate? |
| Reference | (2006) 14:3 Health Law Review, 14 |
| Author(s) | Sheremeta L., Plant M., Knoppers B.M. |
| Title | The Future of Cord Blood Banking in Canada |
| Reference | (2006) 14:3 Health Law Review, 51 |
| Author(s) | Knoppers B.M., Bordet S., Isasi R.M. |
| Title | Preimplantation Genetic Diagnosis: An Overview of Socio-Ethical and Legal Considerations |
| Reference | (2006) 7 Annu. Rev. Genomics Hum. Genet., 201 |
| Author(s) | Knoppers B.M. |
| Title | Biobanks: New Challenges for Bioethics and Biolaw |
| Reference | (2006) Iustitia, 47 |
| Author(s) | Avard D., Kharaboyan L., Knoppers B.M. |
| Title | Newborn Screening for Sickle Cell Disease: Socio-Ethical Implications |
| Reference | First Do No Harm: Law, Ethics and Healthcare (Aldershot: Ashgate Publishing Limited, 2006) |
| Author(s) | Isasi R.M., Knoppers B.M. |
| Title | Beyond the Permissibility of Embryonic and Stem Cell Research: Substantive Requirements and Procedural Safeguards |
| Reference | (2006) 21: 10 Human Reproduction, 2474 |
| http://humrep.oxfordjournals.org/cgi/content/abstract/del235v1 |
| Author(s) | Sillon G., Joly Y. |
| Title | Regard éthico-juridique sur la pharmacogénomique : Perspectives et enjeux |
| Reference | 16ème congrès mondial de droit médical; Actes du congrès (Bordeaux : Association mondiale de droit médical, 2006), vol. 1, 241 |
| Author(s) | Knoppers B.M., Joly Y., Simard J., Durocher F. |
| Title | The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives |
| Reference | (2006) 14:11 European Journal of Human Genetics, 1170 (2006) 14:12 European Journal of Human Genetics, 1322 (corrected) |
| http://www.nature.com/uidfinder/10.1038/sj.ejhg.5201690 |
| Author(s) | Poitras S., Petit E., Knoppers B.M., Godard B. |
| Title | L'industrie montréalaise des biosciences : une évaluation empirique des besoins en matières réglementaire et éthique |
| Reference | Bio-ingénierie et responsabilité sociale (Montréal : Les Éditions Thémis, 2006) |
| Author(s) | Sallée C., Knoppers B.M. |
| Title | Secondary Research Use of Biological Samples and Data in Quebec |
| Reference | (2006) 85 The Canadian Bar Review, 137 |
| Author(s) | Joly Y., Sillon G., Knoppers B.M. |
| Title | La pharmacogénomique : nouveaux médicaments, nouvelles responsabilités? |
| Reference | 1er congrès international interdisciplinaire sur la Chaîne du Médicament, "Le médicament : conception, production et consommation"; Actes du congrès (Montréal : Groupe d'étude sur l'interdisciplinarité et les représentations sociales, 2006), 265 |
| http://www.geirsomedicaments.uqam.ca/congres2005/ActesCongres2005.pdf |
| Author(s) | Lévesque E. |
| Title | Les exigences légales entourant le consentement dans la recherche avec des enfants et des adults inaptes : une piste de solution aux difficultés posées par les art. 21 et 24 C.c.Q. |
| Reference | (2006) 51:2 Revue de droit de McGill, 385 |
| Author(s) | Patenaude A.F., Sénécal K., Avard D. |
| Title | Whither Pediatric Research and Predisposition Genetic Testing? |
| Reference | (2006) 4:2 GenEdit, 1-9 |
| http://www.humgen.org/int/GE/en/2006_6en.pdf |
| Author(s) | Patenaude A.F., Sénécal K., Avard D. |
| Title | La recherche pédiatrique et l’utilisation des tests génétiques de prédisposition : où en sommes-nous ? |
| Reference | (2006) 4:2 GenEdit, 1-10 |
| http://www.humgen.org/int/GE/fr/2006_6.pdf |
| Author(s) | Lévesque E., Petit E. |
| Title | The Legal Framework for Genetic Research in Québec |
| Reference | in Lambert R.D. and DeKoninck M. (eds.), Responsible Conduct in Research. Normative Frameworks (Québec: Faculty of Medicine, Université Laval, 2006) |
| http://www.cours.fmed.ulaval.ca/a05/fileadmin/cours/template/ETH_64841/documents/table_des_matieres/Content_14.pdf |
| Author(s) | Hervé C., Knoppers B.M., Molinari P.A., Grimaud M.A. |
| Title | Systèmes de santé et circulation de l'information : encadrement éthique et juridique |
| Reference | (Paris: Dalloz, 2006) |
| Author(s) | Bucci L.M. |
| Title | Public Understanding of Nanotechnology |
| Reference | (December 2006) Nano and Society, A Newsletter from the Center on Nanotechnology and Society |
| Author(s) | Lévesque E. |
| Title | Enjeux éthiques et légaux soulevés par la recherche en génétique: l'encadrement québécois et le pistes de solution des normes internationales (résumé de présentation) |
| Reference | (2006) 43:3 Annales de biologie clinique du Québec, 11 |
| http://www.sqbc.qc.ca/annales.htm |
| Author(s) | Knoppers B.M. |
| Title | Introduction: Of Genomics and Public Health: Building Public Goods? |
| Reference | in Knoppers B.M. (ed.), Genomics and Public Health: Legal and Socio-Ethical Perspectives (Leiden/Boston: Brill/Martinus Nijhoff, 2006) |
| Author(s) | Avard D. |
| Title | Research and Public Health Surveillance Using Newborn Bloodspots in Canada |
| Reference | in Knoppers B.M. (ed.), Genomics and Public Health: Legal and Socio-Ethical Perspectives (Leiden/Boston: Brill/Martinus Nijhoff, 2006) |
| Author(s) | Joly Y. |
| Title | Wind of Change: In re Fisher and the Evolution of the American Biotechnology Patent Law |
| Reference | (2006) 24:1 Law in Context, 67 |
| Author(s) | Health Canada, External Working Group on the Registration and Disclosure of Clinical Trial Information (EWG-CT)(McGillivray B., Alessi-Severini S., Armstrong P., Belisle J.-P., Binder C., Clark A.F., Downie J., Grimshaw J., Joly Y. et al.) |
| Title | Options for Improving Public Access to Information on Clinical Trials of Health Products in Canada |
| Reference | Ottawa, 2006 |
| http://www.hc-sc.gc.ca/dhp-mps/prodpharma/activit/sci-consult/ewg-ct/ewg_ct_fr_gte_ec_rf_e.html |
| Author(s) | Avard D., Vallance H., Greenberg C., Laberge C., Kharaboyan L., Plant M. |
| Title | Variability in the Storage and Use of Newborn Dried Bloodspots in Canada: Is it Time for National Standards? |
| Reference | (2006) 2:3 Genomics, Society and Policy, 80 |
| Author(s) | Knoppers B.M. (ed.) |
| Title | Genomics and Public Health: Legal and Socio-Ethical Perspectives |
| Reference | (Leiden/Boston: Martinus Nijhoff Publishers, 2006) |
| Author(s) | Samuël J., Alemdjrodo, R., Knoppers B.M. |
| Title | Les droits de l'enfant et la thérapie génique : les enjeux éthiques et les particularités de l'article 21 du Code civil du Québec |
| Reference | (2006) 66: Printemps, Revue du Barreau, 181-210 |
| http://www.barreau.qc.ca/pdf/publications/revue/2006-tome-66.pdf |
| Author(s) | Isasi R. M., Annas G.J. |
| Title | To clone alone: the United Nations' Human Cloning Declaration |
| Reference | (2006) Jan-Jul: 24 Law Hum Genome Rev. 13-26 |
| Author(s) | Isasi, R. |
| Title | The United Nations vs. Cloning: A Pyrrhic Victory? |
| Reference | Under the Sign of Bi Technology, Ethics, Politics and Society, Vol. II; A. Rotania, S. Helfrich edts., Heinrich Boll Foundation Publisher, Rio de Janeiro (2006) pp. 236. |
| Author(s) | Joly Y., Schorno D. |
| Title | Le brevet : Valet ou roi du droit à la santé? |
| Reference | (2006) 19:2 Revue québécoise de droit international |
| Author(s) | Knoppers B.M., Hervé C. |
| Title | Matériel biologique et informatisation : beaucoup de bruit pour rien?/Biological Material and Electronic Data: Much Ado About Nothing? |
| Reference | (France: Les Études Hospitalières, 2006) |
| Author(s) | Grimaud M.A., Knoppers B.M. |
| Title | Introduction générale |
| Reference | Éthique de la recherché et santé publique (Paris: Éditions Dalloz, 2006) |
| Author(s) | Lacroix M., Knoppers B.M. |
| Title | La recherche en génomique : de la protection des individus à l'intérêt commun |
| Reference | Éthique de la recherche et santé publique : où en est-on? (France: Éditions Dalloz, 2006) |
| Author(s) | Knoppers B.M., Kent A. |
| Title | Tool-Sharing Issues in Coherent Population-Based Research |
| Reference | (2006) 7:2 Nature Reviews/Genetics, 84 |
