The Return of Results of Deceased Research Participants

Canadian Legal Information Institute, CanLII, available at <http://www.canlii.org/en/> (last visited August 19, 2011).

U.S. Government, USA.Gov, available at <http://www.usa.gov/Topics/Reference_Shelf/Laws.shtml> (last visited August 19, 2011).

French Secrétariat général du gouvernement, LegiFrance, available at <http://www.legifrance.gouv.fr/> (last visited August 17, 2011).

Centre of Genomics and Policy, HumGen International, available at <http://www.humgen.org/int/> (last visited August 19, 2011).

Council of Europe, Council of Europe Treaties, available at <http://conventions.coe.int/> (last visited August 19, 2011).

National Institutes of Health, Pubmed, available at http://www.ncbi.nlm.nih.gov/pubmed (last visited August 19, 2011).

Google, Google Scholar, available at <http://scholar.google.com> (last visited August 19, 2011).

On this topic, see Lévesque E. Joly Y. Simard J. , “Return of Research Results: General Principles and International Perspectives”; and Knoppers B. M. Lévesque E. , “Introduction: Return of Research Results: How Should Research Results Be Handled?” in this symposium.

World Medical Association, WMA Declaration on Ethical Considerations Regarding Health Databases , Washington, D.C., 2002, available at <http://www.wma.net/en/30publications/10policies/d1/index.html> (last visited August 19, 2011); World Health Organization, Genetic Databases Assessing the Benefits and the Impact on Human & Patient Rights , Geneva, 2003, available at <www.codex.vr.se/texts/whofinalreport.rtf> (last visited August 19, 2011); World Medical Association, WMA International Code of Medical Ethics , South Africa, 2006, available at <http://www.wma.net/en/30publications/10policies/c8/index.html> (last visited August 19, 2011).

Council for International Organizations of Medical Sciences in collaboration with the World Health Organization, International Ethical Guidelines for Biomedical Research Involving Human Subjects , Geneva, 2002, at Guidelines 5 and 18, available at <http://www.fhi.org/training/fr/retc/pdf_files/cioms.pdf> (last visited August 19, 2011); Council for International Organizations of Medical Sciences and the World Health Organization, International Ethical Guidelines for Epidemiological Studies , Geneva, 2008, at Guidelines 5(15) and 18, available at <http://www.fhi.org/training/fr/retc/pdf_files/cioms.pdf> (last visited August 19, 2011).

Id. (Council for International Organizations of Medical Sciences, 2002), at Guideline 5(7); Id. (Council for International Organizations of Medical Sciences, 2008), at Guideline 5(7).

See World Medical Association (2002), supra note 9; Council for International Organizations of Medical Sciences (2008), supra note 10, at Guidelines 18 and 24.

UNESCO, International Declaration on Human Genetic Data, Res G.A. 22 at 39; U.N. GAOR, 32nd Sess. (October 17, 2003), at s. 14(b); UNESCO, Universal Declaration on Bioethics and Human Rights , G.A. Res 36, at 74, U.N. GAOR, 33rd Sess. (October 19, 2005), at s. 9; Human Genome Organization Ethics Committee, Statement on DNA Sampling: Control and Access , London, 1998, available at <http://www.hugo-international.org/img/dna_1998.pdf> (last visited August 19, 2011); Organization for Economic Co-operation and Development, Guidelines on Human Biobanks and Genetic Research Databases , Paris, 2009, at s. 7.F, available at <http://www.oecd.org/document/12/0,3343,en_2649_34537_40302092_1_1_1_1,00.html> (last visited August 19, 2011).

See World Medical Association (2002), supra note 9, at s. 19.

See UNESCO (2005), supra note 13, at s. 16.

UNESCO, Draft Report on the Collection, Treatment, Storage and Use of Genetic Data , Paris, 2002, at s. 31.

See World Health Organization (2003), supra note 9 at 23.

Id., at Rec. 13.

Id., at 16.

Privacy Act, R.S.C. c. P-21.

Personal Information Protection and Electronic Documents Act, S.C., c. 5 (2000).

See Privacy Act, supra note 22, at s. 3; see Personal Information Protection and Electronic Documents Act, supra note 23, at s. 2.

See Privacy Act, supra note 22.

Id., at s. 3 (m).

See Personal Information Protection and Electronic Documents Act, supra note 23.

Id., at s. 7 (3) (h) (ii).

Id., at s. 7 (3) (e).

See Privacy Act, supra note 22.

Id., at s. 8 (2) (m) (i).

Act respecting health services and social services, R.S.Q., ch. S-4.2.

Id., at s. 23.

Act respecting the protection of personal information in the private sector, R.S.Q., ch. P-39.1.

Id., at s. 31.

See Act respecting health services and social services, supra note 33, at s. 23; see Act respecting the protection of personal information in the private sector, supra note 35, at s. 31.

Réseau de Médecine Génétique Appliquée (RMGA), Statement of Principles: Human Genome Research , Quebec, 2000, available at <http://www.rmga.qc.ca/files/attachments/0000/0055/%C3%A9nonc%C3%A9_de_principes_recherche_en_g%C3%A9nomique_humaine_en.pdf> (last visited August 19, 2011).

Id., at s. III (3).

Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans , Ottawa, 2010, available at <http://www.pre.ethics.gc.ca/pdf/eng/tcps2/TCPS_2_FINAL_Web.pdf> (last visited August 19, 2011).

Id., at s. 13.3 (b).

Id., at s. 13.3.

Liss c. Watters, 2010 QCCS 3309 (leave of appeal granted, CA #500-09-020-928-107).

Id., at par. 123.

Id., at par. 122.

Id., at par. 123.

Id., at par. 124.

Public Welfare , 45 C.F.R. 46 (2005).

Id., at s. 46.116 -117.

Id., at s. 46.107 -115 and 46.501–505.

Id., at s. 46.102 f).

Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104–191).

See Public Welfare , supra note 48, at s. 160 and 164.

Id., at s. 164.306 (a) (1) and (3).

Id., at s. 164.514 (a).

Id., at s. 164.502 (f).

Id., at s. 164.502 (g) (4).

American Medical Association, Opinion 5.051 - Confidentiality of Medical Information Postmortem , Chicago, 2000, available at <http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion5051.shtml> (last visited August 19, 2011).

Pate v. Threlkel , 661 So.2d 278 (Fla. 1995).

Id., at par. 29.

Id., at par. 30.

Safer v. Pack, 677 A.2d 1188 (NJ 1996).

Id., at par. 32.

Loi no 2004–800 du 6 août 2004 relative à la bioéthique [Bioethics Law], Journal Officiel de la République Française [Official Journal of French Republic] Gazette of France (July 29, 2004): at 14040.

Id., at s. L.1131.1.

Code de la santé publique [Public Health Code], Consolidated Version (Novembre 8, 2010).

Id., at s. L.1111–7.

Id., at s. L.1110–4.

Code civil [Civil Code], Consolidated Version (October 1, 2010).

Code de la recherche [Research Code], Consolidated Version (May 8, 2010).

Cour Administrative d'Appel de Paris, 3ème chambre [Administrative Appeal Court of Paris, 3rd Chamber] (February 2, 2008).

See UNESCO (2003), supra note 13, at s. 14(b); see UNESCO (2005), supra note 13, s.9; see Human Genome Organization Ethics Committee (1998), supra note 13; see Organization for Economic Co-operation and Development (2009), supra note 13, at s. 7.F; see World Medical Association (2002), supra note 9, at s. 19.

See World Health Organization (2003), supra note 9, at rec. 13.

Binet J.-R. Mazen N.-J. , “Éthique et droit du vivant” [Ethics and Rights of the Living], Revue générale de droit médical 37 (2010): 361–376, at 367.

Deleury É. Goubau D. , Le droit des personnes physiques, 4e édition (Cowansville, Éditions Yvon Blais, 2008): at 899.

As illustrated by the latin maxim, “Infans conceptus pro nato habetus, quoties de commodis ejus agitur,” which means that the conceived child is considered to be born wherever it is in his or her interest.

See Deleury Gaoubau , supra note 82.

Steinbock B. , Life Before Birth: The Moral and Legal Status of Embryos and Fetuses (Oxford: Oxford University Press, 1992): At 24 and s.; Berg J. , “Grave Secrets: Legal and Ethical Analysis of Postmortem Confdentiality,” Connecticut Law Review 34 (2001): 81–122, at 91.

Id. (Berg), at 95.

The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Belmont Report , Bethesda, 1979, available at <http://ohsr.od.nih.gov/guidelines/belmont.html> (last visited August 19, 2011).

Beauchamp T. L. Childress J. F. , Principles of Biomedical Ethics , 6th ed. (Oxford: Oxford University Press, 2008).

Häyry M. Chadwick R. , The Ethics and Governance of Human Genetic Databases: European Perspectives (Cambridge: Cambridge University Press, 2007).

Callahan J. C. , “On Harming the Dead,” Ethics 97, no. 2 (1987): 341–352.

Rawls J. , A Theory of Justice (Oxford: Oxford University Press, 1971).

Hooker B. , “Consequentialism,” in Skorupski J. , ed., The Routledge Companion to Ethics (New York: Routledge, 2010): at 444.

See Rawls , supra note 95.

Durand G. , Introduction générale à la bioéthique: Histoire, concepts et outils [General Introduction to Bioethics: History, Concepts and Tools] (Montreal: Éditions Fides, 1999): At 299.

See Berg , supra note 86, at 94.

Id., at 108.

See Callahan , supra note 93.

See UNESCO (2003), supra note 13, at s. 14(b); see UNESCO (2005), supra note 13, at s. 9; see Human Genome Organization Ethics Committee (1998), supra note 13; see Organization for Economic Co-operation and Development (2009), supra note 13, at s. 7.F.

See World Medical Association (2002), supra note 9, at s. 19.

See World Health Organization (2003), supra note 9, at rec. 13.

James D. S. Leadbeatter S. , “Confidentiality, Death and the Doctor,” Journal of Clinical Pathology 49, no. 1 (1996): 1–4.

See Callahan , supra note 93.

See World Health Organization (2003), supra note 9.