The duty to recontact: Attitudes of genetics service providers

The term "duty to recontact" refers to the possible ethical and/or legal ob ligation of genetics service providers (GSPs) to recontact former patients about advances in research that might be relevant to them. Although current ly this practice is not part of standard care, some argue that such an obli gation may be established in the future. Little information is available, h owever, on the implications of this requirement, from the point of view of GSPs. To explore the opinions of genetics professionals on this issue, we s ent a self-administered questionnaire to 1,000 randomly selected U.S. and C anadian members of the American Society of Human Genetics. We received 252 completed questionnaires. The major categories of respondents were physicia n geneticist (41%), Ph.D. geneticist (30%), and genetic counselor (18%); 72 % of the total stated that they see patients. Respondents indicated that re sponsibility for staying in contact should be shared between health profess ionals and patients. Respondents were divided about whether recontacting pa tients should be the standard of care: 46% answered yes, 43% answered no, a nd 11% did not know. Those answering yes included 44% of physician genetici sts, 53% of Ph.D. geneticists, and 31% of genetic counselors; answers were statistically independent of position or country of practice but were depen dent on whether the respondent sees patients (43% answered yes) or not (54% answered yes). There also was a lack of consensus about the possible benef its and burdens of recontacting patients and about various alternative meth ods of informing patients about research advances. Analysis of qualitative data suggested that most respondents consider recontacting patients an ethi cally desirable, but not feasible, goal. Points to consider in the future d evelopment of guidelines for practice are presented.