Genetics center to launch new genetic-testing initiative

July 05, 2005

(Philadelphia) - July 5, 2005 - As genetic testing for human disease increasingly moves from the science lab to clinical application, The Pew Charitable Trusts announced today that it is making a significant new investment in the Genetics and Public Policy Center to improve the overall effectiveness, safety, and reliability of genetic testing, and to develop and promote recommendations where appropriate. The Center, a joint project of the Trusts and Johns Hopkins University, is part of a growing portfolio of Trusts-sponsored initiatives that addresses the policy implications of emerging technologies.

"Genetic tests increasingly provide prospective parents with vital knowledge at a crucial time - as they make decisions about whether, when and how to start a family when faced with possible transmission of genetic disease," said Rebecca W. Rimel, President and Chief Executive Officer of The Pew Charitable Trusts. "As families weigh such difficult issues, the safety, accuracy, and reliability of the underlying tests should be a given. This is one example of how the Trusts is working to help the public and policymakers understand and successfully and swiftly integrate emerging technologies, and we are pleased to be expanding our partnership with Johns Hopkins."

"Almost daily, there is a report in the news about a new genetic test and the promise it holds for improving well being and promoting health. At the same time, however, the public may not realize how little is known about how valid many of these new tests are, or how much good they actually do," said Ruth R. Faden, Director of the Berman Bioethics Institute at Johns Hopkins. "We are thrilled that this extraordinary award from The Pew Charitable Trusts will allow our Genetics and Public Policy Center to fill this important gap in allowing all of us to benefit responsibly from advances in genetic testing."

The $3 million, two-year grant supplements a previous investment by the Trusts and will enable the Center to work with medical, governmental, business, and research communities to build consensus on how to ensure these diagnostic tools are safe, effective, and accurate. The Trusts has committed nearly $13 million to the Center since it was created at Johns Hopkins in 2002.

Genetic tests can be used for a variety of health-related reasons. For instance, they can determine if an adult is a carrier for certain diseases. When done prenatally, tests can indicate if the child will be born with a disease such as Tay-Sachs or cystic fibrosis. When performed in combination with in vitro fertilization, the technology can identify embryos to transfer to a woman's uterus that are free of specific genetic mutations or chromosome abnormalities. Currently more than 800 clinical tests are available and, as scientists continue to study the relationship between genes and disease, the number available is certain to increase.

"Genetic testing is advancing so fast that it has been difficult for policy to keep pace with the technology," said Genetics and Public Policy Center Director Kathy Hudson. "Science at the laboratory bench today could very easily be a genetic test kit for sale tomorrow, and as a nation we haven't really yet established appropriate ground rules for making sure this rapidly expanding technology is safe and reliable for everyone."

Since its founding three years ago, the Genetics and Public Policy Center has become an important resource for policymakers, the media, the public, and others concerned with issues arising from advances in reproductive and genetic technologies. The Center has worked with scientific, medical, legal, and ethical experts and patient advocates to develop a comprehensive picture of the legal and regulatory environments for reproductive genetic technologies, including genetic testing, which has resulted in an array of policy options that public and private sector decision makers could use to guide the development and use of these powerful new technologies. The Center also conducted the nation's largest and most thorough survey of public attitudes about reproductive technologies and related scientific and ethical issues, including the oversight role of the federal government.

The Center is part of the Phoebe R. Berman Bioethics Institute at Johns Hopkins University and is located on the Washington, DC Hopkins campus. The Institute's mission is to prepare the nation's next generation of leaders in bioethics; to promote research at the intersection of ethics, law, medicine, and science; and to provide policy advice on bioethical issues to the government and the private sector.
The Pew Charitable Trusts is a national charitable organization serving the public interest by informing the public, advancing policy solutions, and supporting civic life. The Genetics and Public Policy Center is one of three Trusts-supported science and technology policy projects, the others being the Project on Emerging Nanotechnologies and the Pew Initiative on Food and Biotechnology.

Genetics & Public Policy Center, Johns Hopkins University

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