The Duty to Recontact: Attitudes of Genetics Service Providers

Abstract

The term "duty to recontact" refers to the possible ethical and/or legal obligation of genetics service providers (GSPs) to recontact former patients about advances in research that might be relevant to them. Although currently this practice is not part of standard care, some argue that such an obligation may be established in the future. Little information is available, however, on the implications of this requirement, from the point of view of GSPs. To explore the opinions of genetics professionals on this issue, we sent a self-administered questionnaire to 1,000 randomly selected U.S. and Canadian members of the American Society of Human Genetics. We received 252 completed questionnaires. The major categories of respondents were physician geneticist (41%), Ph.D. geneticist (30%), and genetic counselor (18%); 72% of the total stated that they see patients. Respondents indicated that responsibility for staying in contact should be shared between health professionals and patients. Respondents were divided about whether recontacting patients should be the standard of care: 46% answered yes, 43% answered no, and 11% did not know. Those answering yes included 44% of physician geneticists, 53% of Ph.D. geneticists, and 31% of genetic counselors; answers were statistically independent of position or country of practice but were dependent on whether the respondent sees patients (43% answered yes) or not (54% answered yes). There also was a lack of consensus about the possible benefits and burdens of recontacting patients and about various alternative methods of informing patients about research advances. Analysis of qualitative data suggested that most respondents consider recontacting patients an ethically desirable, but not feasible, goal. Points to consider in the future development of guidelines for practice are presented.

Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature

“…In the older literature about half of the articles that mentioned a solution suggested involving patients in the process of recontacting. 1,7,10,12,18,21,23,25 Patients could contribute by, for example, contacting the department regularly to inquire about new genetic information, keep the genetics department up to date regarding address and personal information, and checking for new genetic developments on websites. Fitzpatrick et al 12 suggested including informing the media, support groups, and other health professionals in the recontacting process.…”

“…9,30 The other six articles presented data from surveys and focus groups about the implementation of recontacting from the perspective of both counselors and patients. 12,14,25,28,49,59 These studies described opinions on recontacting as part of standard care; possible benefits, burdens and methods; and professional opinions about using genetic registries for recontacting patients. These data showed that opinions of professionals and patients generally differed on who is responsible for recontacting and on the ethical principles of recontacting.…”

Downsizing genomic medicine: Approaching the ethical complexity of whole-genome sequencing by starting small

“…It is uncommon for genetic specialists to recontact patients after their initial diagnostic evaluation, however, and it seems that many are reluctant to do so, unless there are significant implications for the patient. 27,28 Some of these reservations likely reflect long-standing ambiguities about the scope of a genetic professional's "duty to notify" patients about new results that may impact their health. For example, if research findings demonstrate that a variant of unknown significance is indeed deleterious, to what extent do geneticists have a moral or legal obligation to review the tests that they have ordered in the past and recontact those patients whose results may be affected?…”

The ‘thousand-dollar genome’: an ethical exploration

“…32,33 On the one hand, it seems only natural to do so if the involved party may expect health gains, or at the very least greater insight into his medical condition. After all, wasn't that the original reason for seeking out medical aid?…”