Has HHS and the NIH Abandoned Ethics?

by jeeg 27. September 2010 19:39

HHS Secretary Kathleen Sebelius recently informed the SACGHS (Secretary’s Advisory Committee on Genetics Health and Society) that it will be disbanded after its next meeting.  The decision was made by the Secretary in close concert with Dr. Francis Collins at the NIH.  SACGHS was intially 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.  Since its creation, 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 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." In a follow up call with the members of the Committee, Dr. Collins praised the committees' work, including laying the groundwork for an emerging genetic test registry and newborn screening regulations and pointed out that genomics is now being integrated into many specialities.  In a sense he claimed that the committee was a victim of their own success. 


Yes, that’s right folks, all issues of genetics and ethics for the forseeable future have been successfully resolved!  


The real reason for disbanding SACGHS? 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 a couple of Committee members have privately posited that they believe it had something to do with sun-setting their Committee.  Whatever the reason, it is indeed curious that the Department of Health and Human Services would disband such a committee just as issues at the intersection of ethics and biotechnology are starting to grow exponentially.   The public deserves a better explanation.  


Jeremy Gruber  




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