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


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


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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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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]