Perceptions of genetic testing today: Findings from focus groups with the public and interviews with physicians

As genetic tests have become more widely available to the public, particularly with the recent emergence of “direct-to-consumer” (DTC) genetic testing services, there has been considerable reaction to them. Questions have been raised regarding the potential benefits and risks of these tests, as well as the appropriate response by various sectors, including health professionals. For example, while DTC genetic tests may offer consumers personal health information and potentially improve their engagement in medical decision-making, there is concern that consumers may not know or have access to the information necessary to make informed decisions about undergoing genetic testing as well as to understand and act upon the information such tests provide. Because this is a newly emerging area, the National Institutes of Health (NIH) formed a Trans-NIH Communications Group on Genetics and Common Disease to address the anticipated information needs of the public related to genetics and genetic testing. In collaboration with the National Cancer Institute, the Trans-NIH Group conducted formative research with the public and primary care physicians to better understand their attitudes, opinions, and perceptions related to genetic testing. This presentation will discuss the findings from both the in-depth interviews with providers and focus groups with consumers. It is anticipated that the information collected in this effort will allow the government to better understand perceptions of this relatively new and rapidly growing area, and will inform future communication strategies, concepts, and messages of NIH in assisting consumers and healthcare providers in making informed decisions regarding genetic testing.