Ethical, legal, and practical concerns about recontacting patients to inform them of new information: The case in medical genetics

There is a consensus among medical geneticists that it is desirable to reco ntact patients as new information becomes available. Furthermore, some have suggested that there are legal arguments to support an obligation, creatin g a duty to recontact. Thus far much of the discussion among medical geneti cists has focused on the practical concerns of implementing such a policy. However, we think that any such policy raises a number of important ethical concerns that must first be considered. Furthermore, there has not been a careful evaluation of the legal precedents that may reflect on a hypothetic al duty to recontact. In this paper we first present an analysis of the sco pe of approaches and issues to be addressed in the development of ethical p olicy on this question. Secondly, we examine whether there is a legal oblig ation to recontact former patients about advances in genetics, as well as t he legal implications if such a policy were to be adopted. Finally, we cons ider some of the functional and resource implications of adopting a policy of recontact. Our goal is to provide a framework for further discussion of this question and to stimulate further debate and research. (C) 2001 Wiley- Liss, Inc.