Participation in breast cancer susceptibility testing protocols: Influenceof recruitment source, altruism, and family involvement on women's decisions

Objectives. We offered education, counseling, and family-based BRCA1/2 test ing to women at increased risk of breast cancer and assessed (a) their reas ons for participating and (b) whether source of recruitment, desire to help research (altruism), and the need to communicate with their affected relat ive about testing distinguish those who did and those who did not complete each phase of our protocol. Materials and Methods. We sent invitations to 403 women who had completed a questionnaire on BRCA1/2 testing, 178 of whom were considered high risk be cause they had more than one relative on the same side of the family with e arly-onset breast cancer. Results. Among the 132 high-risk respondents from the mid-Atlantic states ( where testing was offered), 36% (n = 47) were interested in counseling. Tho se who actually attended counseling were more likely to have some college e ducation, a higher perceived risk of breast cancer, and a greater fear of s tigma and were less likely to have a daughter than those who did not attend . The reasons for attending that were rated "very important" were to learn about the test (80%), to have the test (43%), and to help research (38%). H igh-risk women were eligible for testing only if their affected relative wa s willing to be tested and tested positive. After the session, 83% intended to ask their affected relative to be tested, but only half of the affected relatives actually came for pretest counseling, The proportion of particip ants who ultimately involved an affected relative was 2.5 times higher amon g women from a clinical population (25%) than among those from a registry p opulation (10%); in this latter population, an altruistic desire to help re search was a greater motivator for participation than interest in being tes ted. Conclusions. Source of recruitment influences both motivations to attend ed ucation and counseling and actual testing behavior. These results have impl ications for interpretation of findings from studies in research settings a s well as for informed consent and decision-making in the context of family -based testing.