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SACGHS to Hold Informational Meeting in 2010 on Impact of Affordable Genomes on Healthcare

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By Turna Ray

At the request of the new National Institutes of Health Director Francis Collins, the HHS Secretary's Advisory Committee on Genetics, Health, and Society is planning to hold a meeting to discuss the potential impact of affordable genomes on the healthcare system.

At the close of a two-day meeting held in Washington, DC, last week, Steven Teutsch, chief scientific officer of the Los Angeles County Department of Health and SACGHS chair, asked committee members to consider several suggestions put forth by Collins for potential areas of focus for the group. In particular, Collins asked the committee to investigate the effects of cheaper technologies, such as sequencing, that will make accessible to consumers information about their whole genome.

"We need to be a forward looking," Teusch told SACGHS members at the meeting. "We're talking about an affordable genome in the foreseeable future. What are the implications for health and healthcare systems?"

NIH's Office of Biotechnology Activities manages SACGHS, which advises the HHS Secretary on the legal, ethical, regulatory, and economic impact of the introduction and adoption of genetic technologies into healthcare. SACGHS, formed in 2002 as an expansion of the former Secretary's Advisory Committee on Genetic Testing, brings together up to 17 scientific, regulatory, and industry experts, and includes non-voting ex-officio members from 19 federal agencies and departments.

Although SACGHS has discussed the topic of "the affordable genome" in the context of previous reports and meetings, the committee agreed to hold an informational meeting next year on how "disruptive technologies" allowing whole-genome analysis will change the healthcare landscape.

Such a meeting would come just as Complete Genomics is expected to launch a service charging $5,000 per whole genome sequenced for bulk orders from genome centers and research institutes. The company has said this service will launch in January 2010 [see In Sequence 08-25-2009].

Illumina earlier this year launched its personal whole genome sequencing service with a $48,000 price tag. However, at the time, llumina CEO Jay Flatley said he expected that price to come down rapidly in the coming months [see PGx Reporter 06-10-2009].

Knome also offers whole-genome sequencing services, priced at nearly $100,000.

Other SACGHS Priorities

Collins also requested that SACGHS discuss in forthcoming meetings the economic value and cost-effectiveness of technological innovations and proposed the committee publish a paper highlighting the advisory group's prior recommendations. Committee members agreed to move forward with both of these recommendations.

Marc Williams, director of the Clinical Genetics Institute at Intermountain Healthcare and an SACGHS member, is already looking at cost-effectiveness issues under the context of comparative effectiveness for the committee.

"We are not certainly ruling out that there are certain places under [Patient-Centered Outcomes Research Act of 2009] where research would have to exclude consideration of cost from the effectiveness," Williams said at the meeting. "But any rational view of comparative effectiveness has to include issues around cost [and] cost effectiveness in the traditional sense."

Williams is leading an SACGHS workgroup evaluating whether genetics and genomics are represented in comparative effectiveness research projects funded by the American Recovery and Reinvestment Act of 2009. Signed into law in February, ARRA provided $400 million to NIH, $300 million to the Agency for Healthcare Research and Quality, and $400 million to the Office of the HHS Secretary to create the Federal Coordinating Council for Comparative Effectiveness Research.

The Obama Administration had intended for comparative effectiveness research to be a tool by which the healthcare system could realize savings by reimbursing the treatments with the most bang for the buck. However, there has been significant push-back from the pharmaceutical industry on tying this type of research to insurance- coverage decisions. Meanwhile, some personalized medicine advocates charge that comparative effectiveness research efforts underway do not sufficiently focus on the use of genomic technologies [see PGx Reporter 07-08-2009].

"After this inventory we will present our findings to the SACGHS. The SACGHS will then determine if anything needs to be brought to the attention of the Secretary about potential gaps," Williams told Pharmacogenomics Reporter this week over e-mail. "There have been some questions (mostly from Congress) as to whether cost-effectiveness should be considered in comparative effectiveness. We are able to look at this to see if from our perspective these questions are being appropriately considered."

The cost-effectiveness of innovative technologies and affordable genomes will be further discussed at SACGHS' next meeting, Feb. 4-5, 2010.

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