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.
Survey Finds Wide Public Support for Nationwide Study of Genes, Environment and Lifestyle
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.
More infoPresident Bush Signs Long-Awaited Genetic Information Nondiscrimination Act
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.
Marketing of Unproven Genetic Tests a Threat to Public Health
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.
Federal Agency Rejects Enhanced Oversight of Genetic Tests, Places Cost Considerations Above Public Health Concerns
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.
Publication Announcement: U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination
While Americans are generally very supportive of the use of genetic information to improve their own health and the health of their families, 92 percent are wary that this same information could be used in ways that harm them, according to a public opinion survey by the Genetics and Public Policy Center conducted in late February and early March of this year.
More infoLax Oversight of Genetic Tests
Better oversight of genetic testing laboratories by the Centers for Medicare and Medicaid Services (CMS) is “critical to ensuring the quality of genetic testing in the United States,” and failure to provide it “poses a risk to the public’s health,” according to a Petition for Rulemaking submitted today to CMS Administrator Mark McClellan by the Genetics and Public Policy Center, Public Citizen, and Genetic Alliance.
More infoImprovement Needed in Genetic Testing Oversight
In recent months many health-related organizations have joined in calling on the Centers for Medicare and Medicaid Services (CMS) to end years of delay in assuring the safety and accuracy of genetic testing. In separate letters to CMS Administrator Mark McClellan, members of Genetic Alliance and a coalition of women’s health groups urged the agency to issue a proposed rule to create a genetic testing specialty under the Clinical Laboratory Improvement Amendments (CLIA) of 1988.
More infoNew Bill Could Jumpstart The Setting of Sound Genetic Public Policy
Sen. Barack Obama (D-IL) introduced legislation to improve development and appropriate use of genetic tests in the United States, the Genetics and Public Policy Center has learned. "The Obama bill accelerates advances in the beneficial applications of genetic technologies to human health, while ensuring appropriate safeguards for the quality of genetic testing," says Center Director Kathy Hudson.
More infoOversight Gaps for Genetic Testing Pose Risks to Public Health
At the invitation of the Senate Special Committee on Aging, Genetics and Public Policy Center Director Kathy Hudson testified on Thursday, July 27 as part of the hearing "At Home DNA Tests: Marketing Scam or Medical Breakthrough?" Hudson made the case that poor oversight of genetic testing has led to a situation in which "there is no way for a consumer to distinguish between the dubious and the decent" genetic tests and the laboratories that perform them.
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