Should Health Professionals be under a Legal Duty to Disclose Familial Genetic Information?

Abstract

This article seeks to explore the idea that a health care professional who becomes aware that a patient has a genetic linked disorder should in some circumstances owe a duty to inform blood relatives of that fact, and that failure to so inform should be redressed through the law of negligence. This is a contention which has appeared in medical literature1 and been the subject of litigation in American jurisprudence.2 Given that medical researchers have identified the genetic causes of many human diseases through more sophisticated methods of DNA sequencing, and have confirmed the hereditary nature of many of these conditions, the disclosure of screening results is a serious and contentious issue. This is particularly so given the increasing importance of preventative medicine as a means of dealing with disease.3 The article suggests, by reference to ethical discourse, and particularly Levinas' theory on responsibility,4 that health professionals do owe a duty of care to a patient's relatives, but that this duty may be discharged in ways which do not necessarily involve the disclosure of the information to those parties, and that it is only in certain, specified circumstances that a duty to disclose the information exists. 1 Lucassen, A. (2007), Should families own genetic information? Yes, BMJ, 335(July), p. 22. 2 Pate v Threlkel (1995) 661 S0 2d (SC Florida); Safer v Puck (1996) 677 2d 1188 (SC, NJ). 3 See Seigler, M. (1982) Confidentiality in medicine – a decrepit concept, N‐Engl J Med, 307, p. 1518, where he refers to medicine expanding ‘from a narrow, disease‐based model to a model that encompasses psychological, social and economic problems’. Also note the increasing emphasis now given to the prevention of diabetes and obesity through lifestyle education. 4 See Levinas, E. (1961) Totality and Infinity, trans. A. Lingus 1969 (Pittsburgh: Duquesne University Press); Levinas, E. (1974) Otherwise Than Being, or Beyond Essence, trans. A. Lingus 1981 (The Hague: Martinus Mijhoff).