Genetic Testing for Susceptibility to Adult-Onset Cancer

The Task Force on Informed Consent recommends that informed consent for cancer susceptibility testing be an ongoing process of education and counseling in which providers elicit participant, family, and community values and disclose their own.

Abstract

OBJECTIVE: To provide guidance on informed consent to clinicians\noffering cancer susceptibility testing. PARTICIPANTS: The Task Force on\nInformed Consent is part of the Cancer Genetics Studies Consortium (CGSC),\nwhose members were recipients of National Institutes of Health grants to\nassess the implications of cancer susceptibility testing. The 10 task force\nmembers represent a range of relevant backgrounds, including various medical\nspecialties, social science, genetic counseling, and consumer advocacy. \nEVIDENCE: The CGSC held 3 public meetings from 1994 to 1996. At its first\nmeeting, the task force jointly established a list of topics. The cochairs\n(G.G. and J.R.B) then developed an outline and assigned each topic to an\nappropriate writer and reviewer. Writers summarized the literature on their\ntopics and drafted recommendations, which were then revised by the reviewers. \nThe cochairs compiled and edited the entire manuscript. All members were\ninvolved in writing this report. CONSENSUS PROCESS: The first draft was\ndistributed to task force members, after which a meeting was held to discuss\nits content and organization. Consensus was reached by voting. A subsequent\ndraft was presented to the entire CGSC at its third meeting, and comments were\nincorporated. CONCLUSIONS: The task force recommends that informed consent for\ncancer susceptibility testing be an ongoing process of education and\ncounseling in which (1) providers elicit participant, family, and community\nvalues and disclose their own, (2) decision making is shared, (3) the style of\ninformation disclosure is individualized, and (4) specific content areas are\ndiscussed.