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Impact of Direct-to-Consumer Genetic Testing

a PSC Research Project [ARCHIVE DISPLAY]

Investigators:   J. Scott Roberts, J. Scott Roberts, Mick P. Couper, Wendy R. Uhlmann

The rapid identification of genetic risk factors for common, complex diseases poses great opportunities and challenges for public health. Genetic information is increasingly being utilized as part of commercial efforts, including direct-to-consumer (DTC) genetic testing to provide risk information on common diseases to consumers. Very few empirical data have been gathered to understand the characteristics of DTC test consumers, the psychological, behavioral and health impact (clinical utility), and the ethical, legal and social issues associated with DTC services.

In the proposed research, we will survey users of the two leading US companies providing DTC genetic testing (23andMe and Navigenics) regarding their response to genetic tests for common diseases of interest, including heart disease, diabetes, Alzheimer?s disease (AD), arthritis, and breast, colon, lung and prostate cancers. Each company now has thousands of customers and each anticipates extensive sales in coming years. Each has agreed to allow our group to survey consumers using third-party data collection and analysis procedures that will enable an independent consideration of the benefits and risks of DTC testing in this format. The companies have also agreed to provide genetic test information (with respondents? permission) for analyses. A total of 1000 consumers (500 from each company) website will be surveyed via the Internet at three time points: 1) before receipt of genetic test results; 2) approximately two weeks following receipt of test results; and 3) six months following receipt of results.

To carry out the proposed research, we have assembled an interdisciplinary team of experts with backgrounds in medicine, genetic testing policy and practice, health communication, genetic counseling, health psychology, health law, bioethics and web survey design. Many team members have collaborated on prior, related ELSI-funded research. Our aims are as follows: 1) to describe who seeks genetic testing and why, collecting information on demographics, motivations for seeking testing, and understanding of genetics; 2) to describe the impact of DTC genetic testing, including psychological impact, risk perceptions and comprehension, and personal utility of services; and 3) to assess what consumers do with their genetic information in the domains of health behaviors, insurance changes, and communication with family and health care providers. This study will produce results that can be translated into recommendations to guide practice and policy in this rapidly emerging area.

Funding Period: 09/26/2010 to 03/31/2011

Country of Focus: USA

This PSC Archive record is displayed for historical reference.

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