02- Sponsored Genetic Testing and Patient Decision Making

Sponsored genetic tests (SGT), which have recently become more prevalent, offer no-cost genetic testing to individuals who meet laboratory and sponsor criteria, typically in return for the use of de-identified data by third-party sponsors such as biopharmaceutical companies. In this study,retrospective chart review combined with semi-structured interviews was used to investigate the patient perspective of SGT. The majority (81.7%, n=89/109) of patients decided to accept the offer of SGT, with no significant differences in age, sex, race, genetic specialty, or insurance type between those who accepted and those who declined SGT. Most interviewees cited financial benefits for participating in SGT, while also placing importance on their own potential involvement in medical research; additionally, participants felt that they could trust the third-party sponsor to act in patients’ best interest and protect patient data. Information gained from the interviews also shed light on the scope of the decision-making process, which often extends past the genetic counseling appointment and involves family members. This study establishes previously unknowninformation about the patient perspective on SGT, setting up for future research to increase insight about the factors at play in the patient decision-making process and the role of the genetic counselor.

Authors: Emma Nelson, Case Western Reserve University; Rebecca Darrah, Case Western Reserve University; Aaron Goldenberg, Case Western Reserve University; Marsha Michie, Case Western Reserve University; Joseph Liu, Cleveland Clinic