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UPDATE: HHS to Let Secretary's Genetics Committee Expire

This article has been updated with comments from an NIH official.

By Matt Jones

NEW YORK (GenomeWeb News) – After more than eight years spent researching, debating, and developing policy ideas about genomic medicine, the Secretary's Advisory Committee on Genetics, Health, and Society (SACHGS) will disband after holding its final meeting in early October.

The committee has provided recommendations for the current and former secretaries of the US Department of Health and Human Services on a wide range of issues that stretch across the genomic medicine tableau including public health and ethics concerns, genetic patenting policies, research collection practices, and how genetics is beginning to be used in education, employment, insurance, and law.

The committee now has "addressed all the major topics" from its original charter and has "fulfilled its mandate," Sarah Carr, associate director of the National Institutes of Health's Office of Biotechnology Activities, said in a notice on Monday.

A scheduled review of the program found that SACGHS had completed its original task and that its charter, which expired last week, would be allowed to sunset after a six-month extension to allow for the final meeting and to complete administrative chores, Carr explained in the posting.

In its final meeting, the committee will seek to finish work on a report on genetics education and training issues, and the members will discuss final thoughts on other issues that continue to face the science and medical policy makers including genomic data sharing, the implications of affordable whole-genome sequencing, and comparative-effectiveness research and clinical utility.

SACGHS was founded in 2002 with the charge of advising HHS on how genetic technologies are being integrated into health care and public health; analyzing uses of genetic information in education, employment, insurance, and law; serving as a public forum for discussion of issues raised by genetic and genomic technologies; and studying the public health, clinical, ethical, economic, and social implications of the era of genomics.

Carr told her fellow committee members in an e-mail last week that the decision to end its affairs was made by NIH Director Francis Collins and HHS Secretary Kathleen Sebelius.

"In reviewing the SACGHS charter and body of work, the NIH Director and the Secretary recognized and appreciated that the major topics related to genetic and genomic technologies had been successfully addressed by the committee through its comprehensive reports and recommendations over the years," Carr explained in the e-mail.

Going forward, the range of issues that SACGHS has been covering will be picked up by a hodge-podge of other committees, such as the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children, the US Food and Drug Administration's Medical Devices Advisory Committee, and the Presidential Commission for the Study of Bioethical Issues, NIH Office of Communications Director John Burklow told GenomeWeb Daily News on Monday.

Over the course of its life, SACGHS has provided detailed reports and policy recommendations that cover an array of issues related genomic medicine, genome-based research, and consumer genomics.

"It's been a very active committee and they have really fulfilled their charge and their mission," Burklow said, adding that SACGHS has had "a good track record" with its proposals. "Many of their recommendations have been implemented, or are being addressed, and they're very forward-thinking in their recommendations."

In 2008, the committee issued a report on the challenges and opportunities of pharmacogenomics that, among other things, advised HHS to put more resources into basic research on the biochemical pathways involved in drug metabolism and reactions, and to develop new approaches to understanding genetic variation and individual responses to drugs. The report also called on HHS to press drug researchers to consult with the US Food and Drug Administration and the US Centers for Medicare and Medicaid Services earlier in the development process, with the idea that FDA should do more to support co-development of pharmacogenomic drugs and diagnostics.

During its existence, the committee also provided research and analysis on policies related to the Genetic Information Nondiscrimination Act as it was being developed and working its way through Congress to former Secretaries Michael Leavitt and Tommy Thompson.

Also among its accomplishments, in the summer of 2009 SACGHS issued a report recommending that HHS take steps to address the regulatory gaps covering direct-to-consumer genetic testing. It suggested that HHS should seek to develop guidelines for the US Federal Trade Commission that would cover advertising claims that DTC genetics companies make about their test services.

This past June, the committee began planning a task force that would research and provide advice on the potential medical problems that may result from the arrival of low-cost, whole-genome sequencing. Burklow said that the committee will discuss the low-cost sequencing report, as well as issues related to the clinical utility of genetic tests and genomic data sharing, at the final meeting next week.

When or if SACGHS will hand off its ongoing projects to other groups is not yet clear, but Burklow said that "genetics-related issues are not going away.

"You have a director [Collins] who's very interested in genomics, genetics, and the implications and research practices," he said.

Other committees that could pick up the slack on genetics issues include the Secretary's Advisory Committee on Human Research Protections, the Medicare Evidence Development & Coverage Advisory Committee, and advisory groups at NIH such as the Advisory Committee to the Director, the Scientific Management Review Board, and the National Advisory Council of the National Human Genome Research Institute.

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