The loss of the HHS Secretary’s Advisory Committee on Genetics, Health and Society (“SACGHS”) will leave a void in the personalized medicine policy landscape. Since its inception in 2002, the SACGHS has served a unique and important purpose—it was the central forum for identifying issues related to the use of genetic and genomic technologies. In doing so, it has developed a high-profile public record of the challenges and promise of personalized medicine and provided all stakeholders and interested government agencies a consistent and multidimensional forum in which to raise and debate these issues. Although some of the issues managed by this Committee will find homes in other existing federal advisory bodies, the Secretary and her constituents are losing a medium in which Administration policy could be addressed with substantial public and private sector input.
As we the members of the committee tried to develop a final letter to transmit to the Secretary containing our concluding thoughts and recommendations for further evaluation, it seemed as if with each additional point the Committee returned to the overarching recommendation that a body like SACGHS be designated to continue its work.
The creation of SACGHS filled an ever-widening void for crosscutting policy analysis and advice. As a former counselor to the Secretary, I have remarked to curious inquiries that the decision not to renew the SACGHS charter is part of the natural cycle of the evolution of cutting-edge policy issues, such as genomics and personalized medicine and how each Administration chooses to address them. Many have questioned the reasons behind this Administration’s decision to sunset the SACGHS, with suggestions that recent efforts moved beyond the scope of their charter, such as the report on gene patents. Dr. Francis Collins, Director of the NIH, provided assurances that this was not the case and, as one of the “dissenters” from the recommendations of the gene patent report, I believe the open debate was reflective, as it should be, of the larger debate on that and other sensitive matters the Committee considered.
I believe there will be a new public forum to address the development of public policy related to personalized medicine. There needs to be a consistent entity that convenes regularly to provide a public record of diverse views by experts and other interested stakeholders and to serve as the medium for cross-agency and cross-department consultations on these topics. Even the most organized, expert and well-read Secretary needs advisors on emerging public policy challenges, and with issues as broad and technical as genomics and a government as big as ours, current and future government leaders will benefit from a critical base of advisors.
Sheila Walcoff is a Partner with McDermott, Will & Emery, LLP. She previously served as health and science policy counselor to HHS Secretary Michael O. Leavitt.