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In the years following FDA approval of direct-to-consumer, genetic-health-risk/DTCGHR testing, millions of people in the US have sent their DNA to companies to receive personal genome health risk information without physician or other learned medical professional involvement. In Personal Genome Medicine, Michael J. Malinowski examines the ethical, legal, and social implications of this development. Drawing from the past and present of medicine in the US, Malinowski applies law, policy, public and private sector practices, and governing norms to analyze the commercial personal genome sequencing and testing sectors and to assess their impact on the future of US medicine. Written in relatable and accessible language, the book also proposes regulatory reforms for government and medical professionals that will enable technological advancements while maintaining personal and public health standards.
Despite international concern about unregulated predictive genetic testing, there are surprisingly few data on both the determinants of community interest in such testing and its psychosocial impact.
Method
A large population-based public survey with community-dwelling adults (n=1046) ascertained through random digit dialling. Attitudes were assessed by structured interviews.
Results
The study found strong interest in predictive genetic testing for a reported susceptibility to depression. Once the benefits and disadvantages of such testing had been considered, there was significantly greater interest in seeking such a test through a doctor (63%) compared to direct-to-consumer (DTC; 40%) (p<0.001). Personal history of mental illness [odds ratio (OR) 2.58, p<0.001], self-estimation of being at higher than average risk for depression (OR 1.92, p<0.001), belief that a genetic component would increase rather than decrease stigma (OR 1.62, p<0.001), and endorsement of benefits of genetic testing (OR 3.47, p<0.001) significantly predicted interest in having such a test.
Conclusions
Despite finding attitudes that genetic links to mental illness would increase rather than decrease stigma, we found strong community acceptance of depression risk genotyping, even though a predisposition to depression may only manifest upon exposure to stressful life events. Our results suggest that there will be a strong demand for predictive genetic testing.
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