Hostname: page-component-cd9895bd7-7cvxr Total loading time: 0 Render date: 2024-12-26T08:44:04.040Z Has data issue: false hasContentIssue false
  • English
  • Français

Familial Communication of Research Results: A Need to Know?

Published online by Cambridge University Press:  01 January 2021

Lee Black  and
Kelly A. McClellan
Get access Rights & Permissions [Opens in a new window]

Extract

In recent years, the research participant’s family’s need, if not right, to know their disease risk has comprised a great deal of the genetic testing discourse. This most often arises in the context of clinical genetic tests for hereditary cancers, especially colorectal and breast cancer, and other genetic disorders where the presence of a genetic mutation greatly increases the likelihood of the disease’s manifestation (such as Huntington’s Disease). However, this discussion has not led to comprehensive or cohesive guidance for health care professionals or patients. Indeed, various governmental and professional bodies run the gamut of possibilities, from no disclosure to family without the consent of the patient, to recognition that genetic risk information is important enough to the family to allow exception to traditional notions of confidentiality.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 39 , Issue 4 , Winter 2011 , pp. 605 - 613
Copyright
Copyright © American Society of Law, Medicine and Ethics 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

American Medical Association Council on Ethical and Judicial Affairs, Code of Medical Ethics of the American Medical Association (Chicago: AMA Press, 2008): at 51.Google Scholar
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.Google Scholar
Knoppers, B. M., “Genetic Information and the Family: Are We Our Brother's Keeper?” Trends in Biotechology 20, no. 2 (2002): 85–86, at 86.CrossRefGoogle Scholar
Liao, S. M., “Is There a Duty to Share Genetic Information?” Journal of Medicine Ethics 35, no. 5 (2009): 306–309, at 309.CrossRefGoogle Scholar
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.Google Scholar
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.Google Scholar
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).+(last+visited+August+18,+2011).>Google Scholar
Id., at 22.Google Scholar
Medical Research Council, Human Tissue and Biological Samples for Use in Research: Operational and Ethical Guidelines, April 2001, at 20.Google Scholar
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).+(last+visited+August+18,+2011).>Google Scholar
Id., at 41.Google Scholar
Human Genome Organization, “HUGO Ethics Committee Statement on DNA Sampling: Control and Access,” Eubios Journal of Asian and International Bioethics 8, no. 2 (1998): 56–57.Google Scholar
Renegar, G. Webster, C. J. Suerzebecher, S. et al, “Returning Genetic Research Results to Individuals: Points-to-Consider,” Bioethics 20, no. 1 (2006: 24–36, at 33.CrossRefGoogle Scholar
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).+(last+visited+August+18,+2011).>Google Scholar
See American Medical Association, supra note 1.Google Scholar
Tarasoff v. Regents of the University of California, 551 P.3d 334 (Cal. 1976); Smith v. Jones [1999] S.C.R. 455.Google Scholar
Pate v. Threlkel, 661 So2d 278, 282 (Fla 1995).CrossRefGoogle Scholar
Safer v. Estate of Pack, 677 A2d 1188, 1192 (N.J. Super. Ct. App. Div. 1996).Google Scholar
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]).Google Scholar
Bergoignan Esper, C., ‘En génétique, quelques propos sur l'information médicale à caractère familial,’ Médecine & Droit 2007, no. 84 (2007): 80–82. (Author's English Translation: Bergoignan Esper, C., ‘Remarks on familial medical information, in genetics,’ Medicine & Law 2007, no. 84 [2007]: 80–82).CrossRefGoogle Scholar
See National Health and Medical Research Council, Privacy, supra note 2.Google Scholar
See Nuffield Council on Bioethics, supra note 2, at 31.Google Scholar
American Society of Human Genetics, Social Issues Subcommittee on Familial Disclosure, “Professional Disclosure of Familial Genetic Information,” American Journal of Human Genetics 62, no. 2 (1998): 474–483, at 474.CrossRefGoogle Scholar
German Society of Human Genetics, Position Paper of the German Society of Human Genetics, 1998, at 6, available at <http://www.medgenetik.de/sonderdruck/en/Position_paper.pdf> (last visited August 18, 2011).+(last+visited+August+18,+2011).>Google Scholar
Id.Google Scholar
Id., at 7.Google Scholar
See National Health and Medical Research Council, supra note 2.Google Scholar
See Renegar, et al, supra note 13, at 31.Google Scholar
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.Google Scholar
Wertz, D. C. Knoppers, B. M., “Serious Genetic Disorders: Can or Should They Be Defined?” American Journal of Medical Genetics 108, no. 1 (2002): 29–35.CrossRefGoogle Scholar
See American Society of Human Genetics, supra note 23.Google Scholar
National Cancer Institute, Genetics of Breast and Ovarian Cancer (PDQ), available at <http://www.cancer.gov/cancer-topics/pdq/genetics/breast-and-ovarian/HealthProfessional/page2> (last visited August 18, 2011).+(last+visited+August+18,+2011).>Google Scholar
See Canadian Institutes of Health Research, supra note 5, at 34.Google Scholar
Id., at 183.Google Scholar
Id.Google Scholar
See American Medical Association, supra note 1.Google Scholar
Id.Google Scholar
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.Google Scholar
Fernandez, C. V. Kodish, E. Weijer, C., “Informing Study Participants of Research Results: An Ethical Imperative,” IRB: Ethics and Human Research 25, no. 3 (2003): 12–19, at 14.CrossRefGoogle Scholar
Kollek, R. Petersen, I., “Disclosure of Individual Research Results in Clinico-genomic Trials: Challenges, Classification and Criteria for Decision-Making,” Journal of Medical Ethics 37, no. 5 (2011): 271–275.CrossRefGoogle Scholar
See American Society of Human Genetics, supra note 23.Google Scholar
See Medical Research Council, supra note 9.Google Scholar
Wilson, B. J. Forrest, K. van Teijlingen, E. R. et al, “Family Communication about Genetic Risk: The Little That Is Known,” Community Genetics 7, no. 7 (2004): 15–24, at 19.Google Scholar
Boddington, P., “Relative Responsibilities: Is There an Obligation to Discuss Genomics Research Participation with Family Members?” Public Health Genomics 13, no. 7–8 (2010): 504–513, at 511.CrossRefGoogle Scholar
Id., at 510.Google Scholar
Id., at 512.Google Scholar
See Canadian Institutes of Health Research, supra, note 5, at 196.Google Scholar
Knoppers, B. M. Joly, Y. Simard, J. Durocher, F., “The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives,” European Journal of Human Genetics 14, no. 11 (2006): 1170–1178.CrossRefGoogle Scholar
World Health Organization, Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services, 1997, available at <http://whqlibdoc.who.int/hq/1995/WHO_HDP_GL_ETH_95.1_(part1).pdf> (last visited August 18, 2011).+(last+visited+August+18,+2011).>Google Scholar