Disclosing Genetic Information to Family Members: The Role of Empirical Ethics

Abstract

The familial and predictive nature of genetic information raises ethical issues regarding its disclosure to biological relatives. Arguments in the bioethics literature have centered on the right of the patient to privacy and confidentiality versus the right of family members to receive information that is clinically relevant to them. Empirical research has shown that although the need for disclosure within the family is rarely contested by patients, they are preoccupied by the ethical dimensions of their ‘genetic responsibility’, share a desire to protect relatives from the possible adverse effects of disclosure, and need guidance regarding what, why, to whom, when and how genetic information should be disclosed to mitigate adverse outcomes. Empirical ethics thus contributes to important insights and help reframe the debate to better address the lived experiences of patients, family members and healthcare professionals.

Key Concepts:

  • Disclosure of genetic information within the family raises particular ethical issues.

  • The disclosure debate has been framed as a conflict between respect for autonomy (i.e. the duty of the clinician to respect patient confidentiality) and beneficence/‘do no harm’ (i.e. the clinician's duty to warn others).

  • It is suggested that a patient's relatives have a right to know genetic information when it is clinically relevant to them.

  • Most patients feel a genetic responsibility to inform family members in order to promote their health and well being.

  • Empirical studies have shown that disclosure decisions are complex and influenced by numerous factors.

  • Empirical ethics involves empirical studies which provide information that can frame ethical debates, enhance normative analysis and inform clinical practices.

Keywords: genetic testing; genetic responsibility; empirical ethics; ethical issues; family; disclosure; right to know; duty to warn; privacy; confidentiality; communication strategies

References

Arribas‐Ayllon M, Sarangi S and Clarke A (2008) Managing self‐responsibility through other‐oriented blame: family accounts of genetic testing. Social Science and Medicine 66(7): 1521–1532.

Black L and McClellan KA (2011) Familial communication of research results: a need to know? Journal of Law, Medicine and Ethics 39(4): 605–613.

Chilibeck G, Lock M and Sehdev M (2011) Postgenomics, uncertain futures, and the familiarization of susceptibility genes. Social Science and Medicine 72(11): 1768–1775.

Chivers Seymour K, Addington‐Hall J, Lucassen AM and Foster CL (2010) What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta‐synthesis of primary qualitative research. Journal of Genetic Counseling 19(4): 330–342.

Clarke A, Richards M, Kerzin‐Storrar L et al. (2005) Genetic professionals’ reports of nondisclosure of genetic risk information within families. European Journal of Human Genetics 13(5): 556–562.

Coates N, Gregory M, Skirton H et al. (2007) Family communication about cystic fibrosis from the mother's perspective: an exploratory study. Journal of Research in Nursing 12(6): 619–634.

Crotser CB and Dickerson SS (2010) Women receiving news of a family BRCA1/2 mutation: messages of fear and empowerment. Journal of Nursing Scholarship 42(4): 367–378.

Davey A, Newson A and O'Leary P (2006) Communication of genetic information within families: the case for familial comity. Journal of Bioethical Inquiry 3(3): 161–166.

Douglas HA, Hamilton RJ and Grubs RE (2009) The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. Journal of Genetic Counseling 18(5): 418–435.

Etchegary H and Fowler K (2008) ‘They had the right to know’: genetic risk and perceptions of responsibility. Psychology and Health 23(6): 707–727.

Etchegary H, Miller F, deLaat S et al. (2009) Decision‐making about inherited cancer risk: exploring dimensions of genetic responsibility. Journal of Genetic Counseling 18(3): 252–264.

Finlay E, Stopfer JE, Burlingame E et al. (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genetic testing 12(1): 81–91.

Forrest LE, Curnow L, Delatycki MB, Skene L and Aitken MA (2008) Health first, genetics second: exploring families’ experiences of communicating genetic information. European Journal of Human Genetics 16(11): 1329–1335.

Forrest LE, Delatycki MB, Skene L and Aitken MA (2007) Communicating genetic information in families: a review of guidelines and position papers. European Journal of Human Genetics 15(6): 612–618.

Forrest Keenan K, Simpson SA, Wilson BJ et al. (2005) ‘It's their blood not mine’: who's responsible for (not) telling relatives about genetic risk? Health, Risk and Society 7(3): 209–226.

Forrest Keenan K, Van Teijlingen E, McKee L, Miedzybrodzka Z and Simpson SA (2009) How young people find out about their family history of Huntington's disease. Social Science and Medicine 68(10): 1892–1900.

Gaff CL, Clarke AJ, Atkinson P et al. (2007) Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics 15(10): 999–1011.

Gaff CL, Collins V, Symes T and Halliday J (2005) Facilitating family communication about predictive genetic testing: proband's perceptions. Journal of Genetic Counseling 14(2): 133–140.

Gallo AM, Angst DB and Knafl KA (2009) Disclosure of genetic information within families: how nurses can facilitate family communication. The American Journal of Nursing 109(4): 65.

Gilbar R (2007) Communicating genetic information in the family: the familial relationship as the forgotten factor. Journal of Medical Ethics 33(7): 390–393.

Godard B, Hurlimann T, Letendre M and Égalité N (2006) Guidelines for disclosing genetic information to family members: from development to use. Familial Cancer 5(1): 103–116.

Gregory M, Boddington P, Dimond R et al. (2007) Communicating about haemophilia within the family: the importance of context and of experience. Haemophilia 13(2): 189–198.

Hallowell N, Ardern‐Jones A, Eeles R et al. (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non‐carriers: patterns, priorities and problems. Clinical Genetics 67(6): 492–502.

Hayat Roshanai A, Lampic C, Rosenquist R and Nordin K (2010) Disclosing cancer genetic information within families: perspectives of counselees and their at‐risk relatives. Familial Cancer 9(4): 669–679.

Holt K (2006) What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing. Journal of Genetic Counseling 15(4): 253–265.

Klitzman R, Thorne D, Williamson J, Chung W and Marder K (2007) Disclosures of Huntington disease risk within families: patterns of decision‐making and implications. American Journal of Medical Genetics Part A 143(16): 1835–1849.

Kohut K, Manno M, Gallinger S and Esplen MJ (2007) Should healthcare providers have a duty to warn family members of individuals with an HNPCC‐causing mutation? A survey of patients from the Ontario Familial Colon Cancer Registry. Journal of Medical Genetics 44(6): 404–407.

MacDonald DJ, Sarna L, Van Servellen G et al. (2007) Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genetics in Medicine 9(5): 275–282.

McCann S, MacAuley D, Barnett Y et al. (2009) Family communication, genetic testing and colonoscopy screening in hereditary non‐polyposis colon cancer: a qualitative study. Psychooncology 18(11): 1208–1215.

McKinnon W, Naud S, Ashikaga T, Colletti R and Wood M (2007) Results of an intervention for individuals and families with BRCA mutations: a model for providing medical updates and psychosocial support following genetic testing. Journal of Genetic Counseling 16(4): 433–456.

Negura A, Matei M, Negur L et al. (2010) Ethical implications of communications molecular test results to families with hereditary predisposition to cancer. Romanian Journal of Bioethics 8(4).

Oostrom I, Meijers‐Heijboer H, Duivenvoorden HJ et al. (2007) A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships. Psychooncology 16(4): 320–328.

Otlowski MFA (2007) Disclosure of genetic information to at‐risk relatives: recent amendments to the Privacy Act 1988 (Cwlth). Medical Journal of Australia 187(7): 398.

Patenaude AF, Dorval M, DiGianni LS et al. (2006) Sharing BRCA1/2 test results with first‐degree relatives: factors predicting who women tell. Journal of Clinical Oncology 24(4): 700–706.

Roygnan C (2008) Le cancer colorectal en oncogénétique: le cas‐index face à la communication à la famille. Psychooncologie 2(3): 146–152.

Shaw A and Hurst JA (2009) ‘I don't see any point in telling them’: attitudes to sharing genetic information in the family and carrier testing of relatives among British Pakistani adults referred to a genetics clinic. Ethnicity and Health 14(2): 205–224.

Stoffel EM, Ford B, Mercado RC et al. (2008) Sharing genetic test results in Lynch syndrome: communication with close and distant relatives. Clinical Gastroenterology and Hepatology 6(3): 333–338.

Stol YH, Menko FH, Westerman MJ and Janssens RM (2010) Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists. Journal of Medical Ethics 36(7): 391–395.

van der Roest WP, Pennings JM, Bakker M, van den Berg MP and van Tintelen JP (2009) Family letters are an effective way to inform relatives about inherited cardiac disease. American Journal of Medical Genetics Part A 149(3): 357–363.

Weiner K (2011) Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol. Social Science and Medicine 72(11): 1760–1767.

Wilkinson R (2010) When is my genetic information your business? Biological, emotional, and financial claims to knowledge. Cambridge Quarterly of Healthcare Ethics 19(01): 110–117.

Wilson BJ and Etchegary H (2010) Family communication of genomic information. In: Tercyak KP (ed.) Handbook of Genomics and the Family, pp 163–189. Springer Science+Business Media. doi: 10.1007/978-1-4419-5800-6_7.

Wiseman M, Dancyger C and Michie S (2010) Communicating genetic risk information within families: a review. Familial Cancer 9(4): 691–703.

Further Reading

Borry P, Schotsmans P and Dierickx K (2005) The birth of the empirical turn in bioethics. Bioethics 19(1): 49–71.

Denbo SM (2006) What your genes know affects them: should patient confidentiality prevent disclosure of genetic test results to a patient's biological relatives? American Business Law Journal 43(3): 561–607.

Gaff CL and Bylund CL (2010) Family Communication About Genetics: Theory and Practice. New York: Oxford University Press.

Hurst S (2010) What ‘empirical turn in bioethics’? Bioethics 24(8): 439–444.

Lacroix M, Nycum G, Godard B and Knoppers BM (2008) Should physicians warn patients’ relatives of genetic risks? Canadian Medical Association Journal 178(5): 593–595.

Web Links

http://hastingshardquestions.org/genetic‐testing The Hastings Center.

http://www.humgen.org/int/GE/en/2010‐2.pdf HumGen International.

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How to Cite close
Dupras, Charles, and Ravitsky, Vardit(Mar 2013) Disclosing Genetic Information to Family Members: The Role of Empirical Ethics. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005959.pub2]