American Medical Association Council on Ethical and Judicial Affairs, Code of Medical Ethics of the American Medical Association (Chicago: AMA Press, 2008): at 51.
2.
National Health and Medical Research Council, Office of the Privacy Commissioner, Use and Disclosure of Genetic Information to a Patient's Genetic Relatives Under Section 95AA of the Privacy Act 1988 (Cth), October 27, 2009; Nuffield Council on Bioethics, Genetic Screening: A Supplement to the 1993 Report by the Nuffield Council on Bioethics, July 2006, at 30.
3.
KnoppersB. M., “Genetic Information and the Family: Are We Our Brother's Keeper?”Trends in Biotechology20, no. 2 (2002): 85–86, at 86.
4.
LiaoS. M., “Is There a Duty to Share Genetic Information?”Journal of Medicine Ethics35, no. 5 (2009): 306–309, at 309.
5.
Canadian Institutes of Health Research (CIHR), Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, at 183.
6.
National Health and Medical Research Council, Australian Research Council, Australian Vice-Chancellors' Committee, National Statement on Ethical Conduct in Human Research, March 2007, at 44.
7.
Japan, Ministry of Education, Culture, Sports, Science and Technology, Ministry of Health, Labour and Welfare, Ministry of Economy, Trade and Industry, Ethical Guidelines for Analytical Research on the Human Genome/Genes, March 29, 2001, at 22, available at <http://www.eubios.info/EGHGR.htm> (last visited August 18, 2011).
8.
Id., at 22.
9.
Medical Research Council, Human Tissue and Biological Samples for Use in Research: Operational and Ethical Guidelines, April 2001, at 20.
10.
United Nations Educational, Scientific and Cultural Organization, International Bioethics Committee, International Declaration on Human Genetic Data, October 16, 2003, at 43, available at <http://unesdoc.unesco.org/images/0013/001331/133171e.pdf#page=45> (last visited August 18, 2011).
11.
Id., at 41.
12.
Human Genome Organization, “HUGO Ethics Committee Statement on DNA Sampling: Control and Access,”Eubios Journal of Asian and International Bioethics8, no. 2 (1998): 56–57.
13.
RenegarG.WebsterC. J.SuerzebecherS., “Returning Genetic Research Results to Individuals: Points-to-Consider,”Bioethics20, no. 1 (2006: 24–36, at 33.
14.
See Knoppers, supra note 3. World Health Organization, Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services, December 15–16, 1997, available at <http://whqlibdoc.who.int/hq/1998/WHO_HGN_GL_ETH_98.1.pdf> (last visited August 18, 2011).
15.
See American Medical Association, supra note 1.
16.
Tarasoff v. Regents of the University of California, 551 P.3d 334 (Cal. 1976); Smith v. Jones [1999] S.C.R. 455.
17.
Pate v. Threlkel, 661 So2d 278, 282 (Fla 1995).
18.
Safer v. Estate of Pack, 677 A2d 1188, 1192 (N.J. Super. Ct. App. Div. 1996).
19.
Loi 2004–800 du 6 août 2004 relative à la bioéthique, Journal officiel de la Republique française, 7 June 2004, 14040, § art. L.1131–1 (2004). (Author's English Translation: Act number 2004–800 of August 6, 2004 on Bioethics, Official Journal of the Republic of France, 7 June 2004, 14040, § art. L.1131–1 [2004]).
20.
Bergoignan EsperC., ‘En génétique, quelques propos sur l'information médicale à caractère familial,’Médecine & Droit2007, no. 84 (2007): 80–82. (Author's English Translation: Bergoignan EsperC., ‘Remarks on familial medical information, in genetics,’Medicine & Law2007, no. 84 [2007]: 80–82).
21.
See National Health and Medical Research Council, Privacy, supra note 2.
22.
See Nuffield Council on Bioethics, supra note 2, at 31.
23.
American Society of Human Genetics, Social Issues Subcommittee on Familial Disclosure, “Professional Disclosure of Familial Genetic Information,”American Journal of Human Genetics62, no. 2 (1998): 474–483, at 474.
See National Health and Medical Research Council, supra note 2.
28.
See Renegar, supra note 13, at 31.
29.
See National Health and Medical Research Council, supra note 2, at 8; Canadian Institutes of Health Research, supra note 5, at 183; German Society of Human Genetics, supra note 25, at 6; Japan, Ministry of Education, Culture, Sports, Science and Technology, supra note 7, at 21; Nuffield Council on Bioethics, Genetic Screening: Ethical Issues, December 1993, at 41.
30.
WertzD. C.KnoppersB. M., “Serious Genetic Disorders: Can or Should They Be Defined?”American Journal of Medical Genetics108, no. 1 (2002): 29–35.
31.
See American Society of Human Genetics, supra note 23.
See Canadian Institutes of Health Research, supra note 5, at 34.
34.
Id., at 183.
35.
Id.
36.
See American Medical Association, supra note 1.
37.
Id.
38.
See National Health and Medical Research Council, supra note 2, at 8; Canadian Institutes of Health Research, supra note 5, at 183; Japan, Ministry of Education, Culture, Sports, Science and Technology, supra note 7, at 22; Medical Research Council, supra note 9.
39.
FernandezC. V.KodishE.WeijerC., “Informing Study Participants of Research Results: An Ethical Imperative,”IRB: Ethics and Human Research25, no. 3 (2003): 12–19, at 14.
40.
KollekR.PetersenI., “Disclosure of Individual Research Results in Clinico-genomic Trials: Challenges, Classification and Criteria for Decision-Making,”Journal of Medical Ethics37, no. 5 (2011): 271–275.
41.
See American Society of Human Genetics, supra note 23.
42.
See Medical Research Council, supra note 9.
43.
WilsonB. J.ForrestK.van TeijlingenE. R., “Family Communication about Genetic Risk: The Little That Is Known,”Community Genetics7, no. 7 (2004): 15–24, at 19.
44.
BoddingtonP., “Relative Responsibilities: Is There an Obligation to Discuss Genomics Research Participation with Family Members?”Public Health Genomics13, no. 7–8 (2010): 504–513, at 511.
45.
Id., at 510.
46.
Id., at 512.
47.
See Canadian Institutes of Health Research, supra, note 5, at 196.
48.
KnoppersB. M.JolyY.SimardJ.DurocherF., “The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives,”European Journal of Human Genetics14, no. 11 (2006): 1170–1178.