Pew Funds Genetics and Public Policy Center's New Consumer Genetics Project
The Pew Charitable Trust has awarded $750,000 to the Genetics and Public Policy Center for a new project focused on consumer protections for applications of genetic testing.
Discussion
How the results compared to the focus groups and survey
The support for the study and likelihood of participation that participants voiced during the town halls was consistent with what we heard in the focus groups and in the national survey we conducted. In the survey, 84 percent of respondents said the study should definitely or probably be done, and 60 percent would definitely or probably participate. Like the focus groups and survey, the town halls demonstrated the importance the public places on access to individual research results. Focus group participants, like those in the town halls, largely felt that study subjects should be able to choose whether to receive individual research results, and what kind.
In both the focus groups and the town halls, participants voiced concerns about privacy, and not allowing health insurance companies access to individuals’ data. They also said that the database should not be exploited by pharmaceutical companies or accessed by law enforcement agencies, and that the results should not be used to discriminate against demographic groups. Both groups of participants showed interest in the details of the proposed study’s methodology, and many made suggestions aimed at ensuring the findings are robust.
Effect of the Genetic Information Nondiscrimination Act
Town hall participants consistently placed privacy and possible misuse of information among their top concerns about the proposed study. The Genetic Information Nondiscrimination Act of 2008 passed the U.S. Senate on April 24, 2008 (the day of the fourth town hall, in Portland), and cleared the House the following week. It was signed into law by the President on May 21. The bill bars employers and health insurance companies from discriminating against individuals based on their genetic makeup. Despite media coverage of the bill’s passage, we saw no change in level of concern about privacy and discrimination between the first three town halls and the final two. Whether and how the new policy affects public attitudes about genetic privacy and discrimination will require follow-up study.
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