Conclusion
Overall, we saw strong support for the proposed study and its goals both at the beginning and at the end of each town hall. Not everyone who supports the study would be willing to participate in it, but more than half of participants indicated they were likely to participate if asked.
This pilot project demonstrates how a community discussion might be conducted for the proposed study – should it be funded – or for other studies that require public input, acceptance, and participation. One limitation of the town halls, however, is that those who attend are not necessarily representative of their communities; many come because they are stakeholders or are otherwise particularly interested in the topic. Attendees also were better educated than the general populace, with most holding at least a bachelor’s degree. A variety of engagement tools would be needed to inform and engage all segments of a community.
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.
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Four in five Americans support the idea of a nationwide study to investigate the interactions of genes, environment and lifestyle, and three in five say they would be willing to take part in such a study, according to a survey released today.
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President Bush today signed into law the Genetic Information Nondiscrimination Act of 2008 (GINA), providing vital protection for Americans against the misuse of genetic test results by heath insurers and employers.
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No mechanism currently exists to ensure that genetic tests are supported by adequate evidence before they go to market, or that marketing claims are truthful and not misleading, according to a policy analysis to be published April 4 in Science. Misleading claims about genetic tests may lead health-care providers and patients to make inappropriate decisions about which tests to take and how to use genetic tests that have potential for profound medical consequences, the authors argue.
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In a decision that places cost concerns above public health, the Centers for Medicare and Medicaid Services (CMS) has rejected a petition filed by a coalition of health and consumer groups calling for the agency to strengthen standards for genetic testing laboratories. Citing cost concerns, the agency told petitioners in a recent letter that it would not pursue the safety standards.
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