By Jeremy Gruber

U.S. Health and Human Services Secretary Kathleen Sebelius recently disbanded the Secretary's Advisory Committee on Genetics, Health, and Society, a decision that was made by the Secretary in close concert with Dr. Francis Collins at the National Institute's of Health.  

SACGHS was initially created eight years ago by the Department of Health and Human Services to advise it and other federal agencies on the ethical, legal and social implications of emerging genetic technologies. A diverse body of national experts, SACGHS has played an important role in addressing these growing issues with thoughtful and well reasoned research and analysis.

A statement posted on the SACGHS website subsequent to the decision to disband it declared: " As part of the renewal process for any committee established under the Federal Advisory Committee Act, the government must periodically assess the continuing need for the committee...In its nearly 10 years of operation, SACGHS has addressed all the major topics delineated in its charter."


According to its charter, SACGHS was charged with:

  • Assessing how genetic technologies are being integrated into health care and public health,          
  • Studying the clinical, public health, ethical, economic, legal, and societal implications of genetic and genomic technologies and applications,    
  • Identifying opportunities and gaps in research and data collection analysis efforts,        
  • Examining the impact of current patent policy and licensing practices on access to genetic technologies,               
  • 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.

How can one argue with a straight face that such goals have been fully realized?

From its groundbreaking work on the Genetic Information Nondiscrimination Act to influential reports on issues ranging from genetic testing guidelines to direct-to-consumer genetic testing, it can hardly be claimed that SACGHS was irrelevant.

Over the years, SACGHS had become the central forum for discussing the rapid developments in genetic policy; a forum designed to facilitate inter-agency discussions and one that was open to both the public and a diverse array of private stakeholders. 

So what was the real reason for disbanding SACGHS? Cost was cited as a contributing factor to the decision, though considering the fact that SACGHS was a body made up of largely uncompensated members, this hardly seems a legitimate justification. The annual budget for SACGHS was less than $200,000 according to its charter, a paltry sum in its own right; but consider, that's out of a total NIH 2010 budget of $31 billion!

Some have suggested that there is more to it, that by making recommendations at odds with industry and its government supporters, the SACGHS initiated its own demise. Lately the Committee has released a couple of controversial reports, in particular a report entitled "Gene Patents and Licensing Practices and Their Impact on Patient Access to Genetic Tests," which found that:

Trends in patent law appear to pose serious obstacles to the promise of these developments [in genetic research and clinical practice]. Patenting has moved upstream; instead of covering only commercial products, patents can now control foundational research discoveries, claiming the purified form of genes. Fragmented ownership of these patents on genes by multiple competing entities substantially threatens clinical and research use.

The report was widely condemned by industry and its supporters. The Biotechnology Industry Organization President Jim Greenwood declared at a press conference that the report would go so far as to:

discourage investment in biotech innovation, hobble the transfer of federally-funded research, undermine university research programs, and harm patients who are waiting for life-saving therapies and diagnostics yet to be developed.

An industry supporter, writing in GenomeWeb, wrote "I'm not as sympathetic to SACGH's demise...because it has made decisions that could threaten clinical labs and patient care."

Perhaps it's just the natural hubris of scientists that think they know all the answers without necessarily understanding the questions. Either way, in the absence of SACGHS or something similar, there will no longer be a central  and independent forum to address the ethical, legal and social issues of emerging genetic technologies. Yet the challenges posed by the rapid advances in genomic research, many as yet unidentified, will continue to present themselves. The disparate agencies left to address these issues have no clear expertise in doing so and no mechanism to discuss how these many issues interconnect and affect each other (representatives of at least 19 Federal departments or agencies were represented as non-voting members on SACGHS).

The public deserves better from its government. Genetic research and technology will continue to have profound implications for public health, most entirely positive, but the eager enthusiasm toward emerging genetic technologies must be paired with an open and accessible discussion of ethical concerns.   


Jeremy Gruber, JD, is President and Executive Director of CRG.

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The purpose of the Genetic Bill of Rights is to introduce a global dialogue on the fundamental values that have been put at risk by new applications of genetics.
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The purpose of the Genetic Bill of Rights is to introduce a global dialogue on the fundamental values that have been put at risk by new applications of genetics.
View Project