Break up of genetics advisory panel seen as premature

by jeeg 7. October 2010 21:34

Last month, Steven Teutsch, chief science officer of the Los Angeles County Health Department, received word that the US Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS), the expert panel he chairs that advises the US Department of Health and Human Services (HHS) on how genetic technologies are integrated into health care, was to be abruptly disbanded in two week’s time.

“We didn't anticipate the committee would end,” Teutsch says. “We were a bit surprised because we had planned to continue this work that we had started.”

Since its inception in 2002, the SACGHS has helped push passage of the Genetic Information Nondiscrimination Act and produced timely reports on gene patents and direct-to-consumer genetic testing, among other fractious topics. With the growing possibility of affordable whole genome sequencing, many committee members and onlookers expected the panel to play a vital role in hashing out the clinical, ethical and legal implications of rapidly developing genomic technologies. But, stating that the SACGHS had addressed all its “major topics,” HHS Secretary Kathleen Sebelius decided last month not to renew the committee’s charter beyond 23 September.

Critics say this move was premature. “The question is, have all the issues been identified and examined in enough depth yet, and I think most of us in the field would probably argue that the answer is no,” says former SACGHS member Huntington Willard, who directs the Duke Institute for Genome Sciences & Policy in Durham, North Carolina.

The SACGHS plans to wrap up a report on genetics education in a final meeting slated for today and tomorrow, and it will have this last meeting to collect its final thoughts on several investigations launched in the past year, including a study into the implications of widespread personal genome data. Although they have an additional six months, there won’t be time to produce full reports on the outstanding topics, Teutsch says. However, the committee will make written recommendations in a final letter to Sebelius, he notes.

According to US National Institutes of Health (NIH) spokesperson John Burklow, the void left by the dissolution of the SACGHS is expected to be filled by existing government advisory committees, including the Presidential Commission for the Study of Bioethical Issues, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children and numerous advisory groups at the NIH.

Although there are other mechanisms for providing input into issues related to genomic medicine, the closing of the committee “sends a message—and the message it sends is a little bit scary,” says David Magnus, a bioethicist at the Stanford Center for Biomedical Ethics in California. “As we move forward with figuring out how to integrate genomics into clinical care, there’s a whole range of new problems that are just barely being addressed.”

Others insist that the committee’s adjournment does not signal a declining commitment to the integration of genetic technologies into health care, but rather the elimination of redundancies. “The risk here is that people will misinterpret what it means as sort of a turning of the administration’s back on the issues, and I personally don’t interpret it that way,” Willard says. Rather, he says, the time has come to stop talking about the possibility of genetic technologies and to make genomic medicine a reality. But, as SACGHS member Charis Eng, a geneticist at the Cleveland Clinic, points out: “This step will be the most difficult.”


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