Who Are You Going to Call? Primary Care Patients’ Disclosure Decisions Regarding Direct–to–Consumer Genetic Testing

Background: Direct–to–consumer genetic testing (DTCGT) offers risk estimates for a variety of complex diseases and conditions, yet little is known about its impact on actual users, including their decisions about sharing the information gleaned from testing. Ethical considerations include the impact of unsolicited genetic information with variable validity and clinical utility on relatives, and the possible burden to the health care system if revealed to physicians. Aims: The qualitative study explored primary care patients’ views, attitudes, and decision making considerations regarding DTCGT. This article focuses on the disclosure decisions participants made regarding participation, testing, and results of DTCGT, a topic which arose as a secondary aim of the study. Methods: Through four longitudinal interviews (pre–test, results, 3 and 12 months post–test) we examined twenty primary care patients’ decisions, expressed intentions, and actions regarding disclosure to immediate and extended family, friends and coworkers, and physicians about participation in and results of DTCGT. Individual interviews were analyzed using qualitative content analysis and a summative approach to describe the global themes. Results: Most participants disclosed to some immediate family; less than half disclosed to extended family; approximately half talked to friends. Most participants stated they would or might disclose to physicians about DTCGT and a few did. Conceptual themes that emerged from the data analysis include ambivalence about disclosure, consistency between intention and actual disclosure behavior and decisions, and conditional information sharing. Conclusions: Participants’ intentional and actual disclosure patterns offer insight into how they view DTCGT, weigh results, and the potential impact of DTCGT