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Ethics

Bartha Maria Knoppers

Note biographique
Équipe et projets de recherche
Publications and conferences
 Affiliations
Cours enseignés depuis les cinq dernières années
Curriculum-vitæ

Bartha Maria Knoppers

Full professor (Adjunct)
Director, Centre of Genomics and Policy
Ph.D. Université de Paris I; LL.M. Cambridge University, Trinity College; LL.B. / BCL Université McGill
Axis Law, Biotechnology and Community
Interests: Human rights issues, human genetics and comparative law


bartha.knoppers@mcgill.ca
Bartha Maria Knoppers

Biography

Director, Centre of Genomics and Policy at McGill University, Professor (Adjunct) at the Faculté de droit, Université de Montréal and Associate Researcher at the Centre for Public Law (C.R.D.P.). Former Chair of the International Ethics Committee of the Human Genome Organization (HUGO), (1996-2004), she was a member of the International Bioethics Committee of the United Nations, Educational, Scientific and Cultural Organization (UNESCO) which drafted the Universal Declaration on the Human Genome and Human Rights (1993-1997).  She is also Co-Founder of the International Institute of Research in Ethics and Biomedicine (IIREB) and a Co-Director of the Quebec Network of Applied Genetic Medicine (RMGA).  She also founded the international Public Population Project in Genomics (P3G) in 2003.



In 2008, she received a Doctor of Laws Laws Honoris Causa from the University of Alberta, in October 2001, a Doctor of Laws Honoris Causa from the University of Waterloo, in December 2002, a Doctor of Medicine Honoris Causa from Université de Paris V (René Descartes) and on June 6th, 2007, she received a Doctor of Laws Honoris Causa from McMaster University.  In February 2002, she was elected Fellow of the American Association for the Advancement of Science and in May 2002 was named Officer of the Order of Canada and received the Queen's Jubilee Medal.

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Équipe et projets de recherche

Current projects

Completed projects

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Publications and conferences

Articles since 2004


  • JOLY, Y., C. PHAM, D. SCHORNO and B.M. KNOPPERS, “Down the Rabbit Hole: Technology Transfer in the Field of Stem Cell Research”, Harvard Journal of Law & Technology, (Submitted).
  • COHEN, Cynthia B., B. BRANDHORST, A. NAGY, A. LEADER, B. Dickens, Rosario M. ISASI, D. Evans, and B.M. KNOPPERS, “The Use of Fresh Embryos in Stem Cell Research: Ethical and Policy Issues”, (2008) Cell Stem Cell, 416-421.
  • KNOPPERS, B.M., I. FORTIER, D. LEGAULT and P. BURTON, “The Public Population Project in Genomics (P3G): A proof of concept?”, (April 2, 2008) European Journal of Human Genetics 16, 664-665.
  • LACROIX, Mireille, Gillian NYCUM, Béatrice GODARD, B.M. KNOPPERS, “Should physicians warn patients' relatives of genetic risks?”, 178(5) (2008) CMAJ, 593-595.
  • CAULFIELD, Timothy, Amy L. McGUIRE, B.M. KNOPPERS et al, “Research Ethics Recommendations for Whole-Genome Research: Consensus Statement”, 6(3) (2008) PLoS Biology, 0430-0435.
  • BUCCI, Lucie Marisa and B.M. KNOPPERS, “Toward a Canadian Policy Framework on Nanomedicine: Lessons from Reproductive Technologies”, IV (2007) Diritto Pubblico ComparatoEd Europeo, 1676-1684.
  • DAY, Brent, Renée LANGLOIS, Mark TREMBLAY and B.M. KNOPPERS, “Canadian Health Measures Survey: Ethical, Legal and Social Issues”, 18 (2007) Statistics Canada, Supplement to Health Reports, 37-51.
  • JOLY, Y., F. WAHNON, B.M. KNOPPERS, “Impact of the Commercialization of Biotechnology Research on the Communication of Research Results: North American Perspective”, (Spring 2007) 8(1) Harvard Health Policy Review, 71-84.
  • ISASI, R.M., B.M. KNOPPERS, “Monetary payments for the procurement of oocytes for stem cell research: In search of ethical and political consistency”, Stem Cell Research (2007) 1, 37–44.
  • KHARABOYAN, L., B.M. KNOPPERS, D. AVARD, J. NISKER, “Understanding Umbilical Cord Blood Banking: What Women Need to Know Before Deciding”, 17 (2007) Women's Health Issues, 277-280. CAMBON-THOMSEN, A., E. RIAL-SEBBAG, B.M. KNOPPERS, “Trends in Ethical and Legal Frameworks for the Use of Human Biobanks”, 30(2) (2007) Eur Resp J, 373-382.
  • KNOPPERS, B.M., Ma'n ABDUL-RAHMAN, Karine BÉDARD, “Genomic Databases and International Collaboration”, 18 (2007) KLJ, 291-312.
  • BORDET, Sylvie, Sabrina FELDMAN and B.M. KNOPPERS, “Legal Aspects of Animal-Human Combinations in Canada”, 1(1) (2007) McGill Health Law Publication, 83-99.
  • KNOPPERS, B.M., Yann JOLY, “Our Social Genome?”, 25(7) (2007) TRENDS in Biotechnology, 284-288.
  • KNOPPERS, B.M. et al (International Stem Cell Forum Ethics Working Party), “Oocyte Donation for Stem Cell Research”, 316 (2007) Science, 368-369.
  • SAMUEL, Julie, Richard ALEMDJRODO and B.M. KNOPPERS, « Les droits de l'enfant et la thérapie génique : les enjeux éthiques et les particularités de l'article 21 du Code civil du Québec », 66 Printemps (2006) Revue du Barreau, 181-210.
  • KNOPPERS, B.M., Y. JOLY, J. SIMARD, F. DUROCHER, “The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives”, 14(11) (2006) European Journal of Human Genetics, 1170-1178 (corrected 14(12) (2006) 1322).
  • SALLÉE, Clémentine and B.M. KNOPPERS, “Secondary Research Use of Biological Samples and Data in Quebec”, 85 (2006) La revue du barreau canadien, 137-151.
  • ISASI, Rosario M. and B.M. KNOPPERS, “Beyond the Permissibility of Embryonic and Stem Cell Research: Substantive Requirements and Procedural Safeguards”, 21(10) (2006) Hum. Reprod., 2474-2481.
  • KNOPPERS, B.M., “Biobanks: New Challenges for Bioethics and Biolaw”, 1 (2006) Justitia, 47-53.
  • KNOPPERS, B.M., S. BORDET and R.M. ISASI, “Preimplantation Genetic Diagnosis: An Overview of Socio-Ethical and Legal Considerations”, 7 (2006) Annu.Rev. Genomics Hum. Genet., 201-221.
  • KNOPPERS, B.M. et al (International Stem Cell Forum Ethics Working Party), “Ethics Issues in Stem Cell Research”, 312 (2006) Science, 366-367.
  • LÉVESQUE, Emmanuelle, B.M. KNOPPERS and D. AVARD, « La protection de l'information génétique dans le domaine médical au Québec : principe général de confidentialité et questions soulevées par les dispositions d'exception », 36(1-2) (2005-06) Revue de droit, Université de Sherbrooke, 101-131.
  • ISASI, Rosario M., B.M. KNOPPERS, “Mind the Gap: Policy Approaches to Embryonic Stem Cell and Cloning Research in 50 countries”, 13(1) (2006) European Journal of Health Law, 9-26.
  • AVARD, Denise, Peter BRIDGE, Lucie M. BUCCI, B.M. KNOPPERS et al, “Partnering in oncogenetic research – The INHERIT BRCAs experience: Opportunities and challenges”, 5 (2006) Familial Cancer, 3-13.
  • KNOPPERS, B.M. and A. KENT, “Tool-Sharing Issues in Coherent Population-Based Research”, 7(2) (2006) Nature Reviews/Genetics, 84.
  • JOLY, Y. and B.M. KNOPPERS, “Pharmacogenomic Data Sample Collection and Storage: Ethical Issues and Policy Approaches”, 7(2) (2006) Pharmacogenomics, 219-226.
  • KNOPPERS, B.M. and A. KENT, “Policy Barriers in Coherent Population-Based Research”, 7(1) (2006) Nature Reviews/Genetics, 8.
  • KNOPPERS, B.M., M. SAGINUR, H. CASH, “Ethical Issues in Secondary Uses of Human Biological Materials from Mass Disasters”, 34(2) (2006) American Journal of Law, Medicine and Ethics, 352-365.
  • PLANT, Margo and B.M. KNOPPERS, “Umbilical Cord Blood Banking in Canada: Socio-Ethical and Legal Issues”, 13 (2005) Health Law Journal, 187-212.
  • KNOPPERS, B.M., “Overview of Law and Policy Challenges”, 66 (2005) Louisiana Law Review, Symposium: Proceedings of “The Genomics Revolution? Science, Law and Policy”, Special Issue, 21-31.
  • MALINOWSKI, Michael J., B.M. KNOPPERS, C. BOUCHARD, “Introduction”, 66 (2005) Louisiana Law Review, Symposium: Proceedings of “The Genomics Revolution? Science, Law and Policy”, Special Issue, 1-7.
  • KNOPPERS, B.M., “Of genomics and public health: Building public “goods”?”, 173(10) (2005) CMAJ, 1185-1186.
  • COTTON, R., C. SALLÉE, B.M. KNOPPERS, “Locus-Specific Databases: From Ethical Principles to Practice”, 26(5) (2005) Human Mutation, 484-493.
  • KNOPPERS, B.M. and M. SAGINUR, “The Babel of Genetic Data Terminology”, 23(8) (2005) Nature Biotechnology, 925-927.
  • KNOPPERS, B.M., “Consent Revisited: Points to Consider”, 13(2&3) (2005), Health Law Review, 33-37.
  • KNOPPERS, B.M., “Human Dignity: In Danger of Banality?” (The Case of Cloning), 35(3) (2005) Case Western Reserve, Journal of International Law, 385-395.
  • LÉVESQUE, E., B.M. KNOPPERS, D. AVARD, «La génétique et le cadre juridique applicable au secteur de la santé : examens génétiques, recherche en génétique et soins innovateurs », 64 (2004), Revue du Barreau, 57-102.
  • KNOPPERS, B.M., “Biobanking: International Norms”, 33(1) (2005) The Journal of Law, Medicine and Ethics, 7-14.
  • JOLY, Y., B.M. KNOPPERS, and M.T. NGUYEN, “Stored Tissue Samples: Through the Confidentiality Maze”, 5(1) (2005) The Pharmacogenomics Journal, 2-5.
  • KNOPPERS, B.M. and Ruth CHADWICK, “Human genetic research: emerging trends in ethics”, 6 (2005) Nature Reviews/Genetics, 75-79.
  • KNOPPERS, B.M. and Rosario M. ISASI, “Regulatory approaches to reproductive genetic testing”, 19(12) (2004) Human Reprod. 2695-2701.
  • JOLY, Yann and B.M. KNOPPERS, “BRCA Gene Patents and the European Patent Office”, 4(2) Winter (2004), Lab Report, 6-8.
  • SAGINUR, M., L. KHARABOYAN, B.M. KNOPPERS, “Umbilical Cord Blood Stem Cells: Issues with Private and Public Banks”, 12 (2004) Health Law Journal, 17-34.
  • ISASI, Rosario, A., B.M. KNOPPERS, Peter A. SINGER and Abdallah S. DAAR, “Legal and Ethical Approaches to Stem Cell and Cloning Research: A Comparative Analysis of Policies in Latin America, Asia, and Africa”, 32(4) Winter (2004), The Journal of Law, Medicine & Ethics, 626-640.
  • KHARABOYAN, Linda, Denise AVARD and B.M. KNOPPERS, “Storing Newborn Blood Spots: Modern Controversies”, 32(4) Winter (2004), The Journal of Law, Medicine & Ethics, 741-748.
  • KAUFFMANN, F. and the Post Genome Respiratory Epidemiology Group (B.M. KNOPPERS), “Post-genome respiratory epidemiology: a multidisciplinary challenge”, Eur Respir J 3(24) (2004), 471-480.
  • KNOPPERS, B.M., Yann JOLY, “Physicians, Genetic Information and Life Insurance”, 170(5) CMAJ, 1921-23.
  • KNOPPERS, B.M., R. ISASI, “Opinion: Regulatory Approaches to Reproductive Genetic Testing”, 19(12) (2004) Human Reproduction, 2695-2701.
  • KNOPPERS, B.M., “Of Biotechnology and Man”, 252 (2004), Community Genetics, 176-181.
  • GODARD, Béatrice, J. MARSHALL, C. LABERGE, B.M. KNOPPERS, “Strategies for Consulting with the Community: The Cases of Four Large Scale Genetic Databases”, 10(3) (2004), Science and Engineering Ethics, 457-478.
  • KNOPPERS, B.M., « Enjeux éthiques de la recherche en génétique », 4(1) (2004), Le Courrier de l'éthique médicale, 16-19.
  • KNOPPERS, B.M., “Biobanks: Simplifying Consent”, 5(7) (2004) Nature Reviews/Genetics, 485. KNOPPERS, B.M., (HapMap Consortium), “Integrating Science and Ethics in the International HapMap Project”, 5(6) (2004) Nat. Rev. Genet., 467-475.

Selected publications prior to 2004

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Affiliations

Chaires

2000 - 2014
Canada Research Chair in Law and Medicine

2004
Chaire, Ethics Committee, International Stem Cell Forum

2002
Co-chaire, Ethics Committee, International HapMap Project (NIH)

1996
Chair, International Ethics Committee, Human Genome Organization (HUGO)

Comités scientifiques

2004 Member, Expert Advisory Committee, Canadian Health Measures Survey.
2004 Expert Advisory Group, National DNA Bank, Genoma España.
2003 Member, Board, Canadian Centre for Ethics in Sport.
2002 Member, President's International Advisory Committee (Canadian Institutes of Health Research).
2002 Member, Professional Ethics Committee, American Society of Human Genetics
2002 Member, Scientific Advisory Board, Chinese National Human Genome Center, Shanghai
2002 Member, Expert Group on Biotechnology and Human Rights, High Commissioner on Human Rights, United Nation, Geneva
2000 Member, Genome Canada Board
2000 Member, International Genetic Epidemiology Society (Ethics, Law & Social Issues Committee)

Colloques et séminaires

17e Entretiens du Centre Jacques-Cartier : Allocations de ressources en santé : enjeux, perspectives et choix éthiques et bioéthiques (Montréal, 7 et 8 octobre 2004)

La recherche en génétique et en génomique : droits et responsabilités (Montréal, 2-3 décembre 2004)

Cycle de conférences de la Chaire de recherche du Canada en droit et médecine (Université de Montréal, 16 avril 2004 au 16 mars 2005)

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Cours enseignés depuis les cinq dernières années

DRT6882C Droit, biotechnologies et société (médecine moderne) (2e cycle)

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Curriculum Vitæ

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