Genetics and Public Policy Center

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.

The Genetic Town Hall

The Genetics and Public Policy Center’s Public Consultation Project on Genes, Environment, and Health consisted of focus groups, interviews with community leaders, a survey, and a series of town halls. This report summarizes the five town hall sessions, which took place from March-May 2008 in Jackson, Mississippi; Kansas City, Missouri; Philadelphia, Pennsylvania; Phoenix, Arizona; and Portland, Oregon.

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.

President 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.

U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination

Lax 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.

Public Health at Risk

The Human Genome Project unleashed a torrent of information about the human genome and the role of genetic variation in human health. As a result, genetic testing is now among the fastest growing areas of laboratory medicine. Today, genetic tests for about 1000 diseases are clinically available, with hundreds more available in a research setting.

Improvement 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.

New 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.

Oversight 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.

IVF, Egg Donation, and Women’s Health

To date, more than one million babies have been born worldwide as a result of IVF and in 2003 U.S fertility clinics reported 112,872 IVF cycles. Although there has been considerable medical literature exploring the possible health effects of in vitro fertilization to babies born from this technology, the potential health risks to the women who undergo this process have been less extensively studied.

Creating a Genetic Testing Specialty Under CLIA

Since the inception of the Human Genome Project in 1990, genetic testing has become an increasingly integral component in the diagnosis, treatment, management, and prevention of numerous diseases and conditions. Today, the number of genetic tests available is rising dramatically, with new tests entering the healthcare market every day. Information gained from genetic test results has a significant impact on medical decision-making.