Too Too Too Fast

Last week, Turna Ray reported that the Department of Health and Human Services Secretary’s Advisory Committee on Genetics, Health, and  Society will soon be no more (the non-genomic media seem to have ignored the story altogether).

“In reviewing the SACGHS charter and body of work, the NIH Director [Francis Collins] and Secretary [Sebelius] recognized and appreciated that the major topics related to genetic and genomic technologies had been successfully addressed by the committee through its comprehensive reports and recommendations issued over the years,” wrote Sarah Carr, SACGHS executive secretary.

Not surprisingly, this decision and its laughable “mission accomplished” rationale have provoked a bit of shock and consternation. As Dan Vorhaus wrote, “…it is clear that even those issues SACGHS investigated in detail have not been resolved with any meaningful degree of finality.”

I don’t see how they ever would be. And this is exactly why I think pulling the plug is the right thing to do. In my forthcoming book, I have this to say about SACGHS circa 2008 (emphasis added):

The meetings took place in the Hubert H. Humphrey Building, a singularly ugly 1970s edifice that serves as the headquarters of the Department of Health and Human Services and lives in the shadow of the Capitol. Day One of the meeting was as boring and Kafka-esque a gathering as I’d ever attended, devoted to a dissection of the process by which the committee would decide what its priorities were; I thought I’d stumbled into a scene from the film Brazil. Two hours into the session my posterior was numb and I could feel my eyes rolling back in my head.

I can think of a long list of people I respect greatly who have served on SACGHS with distinction. And I agree with Dan that the Committee has done a number of worthwhile things. On a personal level, I am grateful and proud that I was able to contribute to the case studies that informed the Committee’s report on Gene Patents and Licensing Practices and Patient Access to Genetic Tests. But my God, intellectual property and genetic technologies were on the SACGHS docket seven years ago. Hello?

The genomics (not “genetics”) world is changing too fast for government committees that have to struggle with layers of bureaucracy and quixotic efforts at consensus-building.

But don’t take my word for it. Listen to the Director of the National Human Genome Research Institute at the June session on the Implications of Affordable Whole-Genome Sequencing:

…one observation I would make is that the field is moving faster than a committee like this can deal with. So [to wait] 4 months or 6 months with what is currently happening is a huge amount of time…

I couldn’t agree more. I don’t pretend to know what sort of deliberative body might be best suited to take up issues pertaining to a whole-genome world.

What I do know is that it doesn’t exist yet.

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