Attitudes Towards Anonymous Testing for BRCA 1/2. By Tammy Ader
Because of the worries of confidentiality and genetic discrimination, some patients undergo genetic testing anonymously. This has previously been documented and studied regarding Huntington disease. In this study, anonymous testing of BRCA1/2 was examined, specifically the prevalence of it, and how genetic counselors feel about it. The first phase of this study consisted of telephone focus groups in order to elicit the complex attitudes and experiences with anonymous testing for BRCA1/2s. Information obtained via the focus groups was also used to develop a web-based survey employed during the second phase of the study. The survey served to quantify the prevalence of anonymous testing for BRCA1/2 and assess the attitudes of genetic counselors about anonymous testing. The survey was also used to obtain descriptive information about the respondents' experience with anonymous testing as well as their feelings about guidelines for anonymous testing for BRCA1/2. The study showed that, while not a majority, a significant number of genetic counselors have provided anonymous BRCA1/2 testing at one point in their careers. A majority of counselors have gotten requests for anonymous testing for BRCA1/2. While it seemed most counselors had personal feelings against anonymous testing, they would still make this option available for patients. A small percentage of counselors have institutional guidelines concerning anonymous testing for BRCA1/2; most of these prohibit or discourage it. Counselors have mixed feelings about whether the National Society of Genetic Counselors should have guidelines regarding anonymous testing for BRCA1/2 and what sort of guidelines they would be comfortable with. Most counselors agree however, that guidelines should not mandate that counselors provide anonymous testing. In summary, a substantial portion of cancer genetic counselors have either done anonymous testing or had it requested of them. While there is no consensus for how genetic counselors feel about anonymous testing, most are not opposed to performing it if requested. However, a discussion of the realities of genetic discrimination, and a plan for what the patient will do with the information, such as telling health care providers, seem essential in any session where anonymous testing for BRCA1/2 is brought up. Because of the lack of agreement about what guidelines should say or a consensus supporting the development of guidelines, a discussion in the genetics community, rather than guidelines, may be most appropriate for anonymous testing.