Genetic Counseling Program

Untitled Document

Genetic Counselor's 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.

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  • "I chose to attend UNCG because of its shared learning environment and the access to some of the leading institutions in the country. "

  • "UNCG is a great fit for me. The program directors have extensive experience in the world of genetic counseling and provide you with opportunities to work with some of the best medical centers in the country.¬†Our location allows us to have expert guest lecturers, many of whom you also get to work alongside or observe in your clinical rotations in your second year. We also have some really wonderful and unique opportunities as a part of this program: we observe in syndrome specific support groups and clinics, tour genetic laboratories, and are matched with a family with a genetic disease to learn what it is like to live with a genetic condition. Finally, our directors are genuinely invested in each of us, and care about our success and getting to know each of us personally."

  • "The director and assistant director do their best to ensure that our program provides a collaborative learning experience.  Both are active members of the Genetic Counseling community and strive to introduce you to all aspects of this field.  We also have renowned clinical sites and the beautiful state of North Carolina at our disposal.”