Direct-to-consumer genetic testing (DTC-GT) seems to be a blemish on our practice that just won’t go away. Despite attempts to pop, squeeze, and extract the blemish, it is here to stay. As such, the National Society of Genetic Counselors1 and the American Society of Human Genetics2 recommend that counseling be offered to consumers of DTC-GT to aid in the interpretation of DTC-GT results. Vicky Hsieh, MS, CGC, her equally contributing second-author, Tamara Braid, MS, CGC, and their graduate school Capstone research project supervisors joined forces to inquire just how genetic counselors feel about providing counseling to consumers of DTC-GT.
As part of their project, Hsieh and Braid conducted both quantitative and qualitative research. Among many informative findings gained from the quantitative study, they learned 31.2% of respondents agreed or strongly agreed that they are comfortable providing counseling to DTC-GT consumers, 40.1% saw at least one consumer in clinic for the sole purpose of reviewing DTC-GT results, and 75.9% were asked questions regarding DTC-GT in genetic counseling sessions scheduled for other purposes. Compared to several older studies, there seems to be an uptake in DTC-GT and growing interest in the topic from consumers. The data acquired in the qualitative study include interviews with 17 genetic counselors who have varying opinions about DTC-GC. The authors hope to publish the findings from that aspect of the project soon.
Hsieh’s three-and-a-half-year genetic counseling career has been impressive. She has been working at State University of New York Downstate Medical Center in the Department of Obstetrics and Gynecology and was recently promoted to Director of Genetic Services. She has become the go-to person for research projects concerning obstetrics and genetics and spends about four hours on research per week. She explains her interest in this way: “Working in a large academic hospital, I quickly realized as genetic counselors, we have a very unique perspective and can act as a bridge between different specialties and healthcare professions. It is very important for us to stay relevant and evolve with the scientific understanding of genetics and genomic technology.”
Hsieh has some advice for genetic counselors interested in contributing to research in our field. She states, “The truth is, publishing and research is not easy. There is so much work that goes on behind the scenes before any publication sees the light of day. Don’t be discouraged if you get rejected by journals and stand your ground when you are being asked to edit your paper in a direction you are not comfortable with.” She also recommends working with colleagues who will encourage you to keep moving forward when you are feeling discouraged. Finally, she encourages genetic counseling students to consider further investigation of genetic counselor opinions on DTC-GT as there are still knowledge gaps in this area.
- National Society of Genetic Counselors (2019). NSGC Position Statement
on Direct Access to Genetic Testing. Retrieved from www.nsgc.org
- American Society of Human Genetics (2007). ASHG Position Statement
on Direct-to-Consumer Genetic Testing in the United States. Retrieved