He also said that he is "delighted" that direct-to-consumer genetic testing services are being offered, even though the field "has become a favorite whipping boy for some of us." He said it is good "that the public is having the chance to learn about their genomes if they think they want to know ... and that companies are doing this in a responsible way. But, of course, there are some things on the web that are not responsible."
In addition, Collins endorsed the call by the Secretary's Advisory Committee on Genomics, Health and Society to create a public database of information that would give consumers "a place to go to seek objective information about the clinical validity and clinical utility of these tests.
"It's disturbing to see that there hasn't been much progress on that because it makes so much sense," he said, adding that without "some objective way to evaluate" these gene tests there will be "some other entities on the scene that are a little less responsible."
Given the major role that Collins is likely to play in determining the agenda of the Obama government for personalised medicine, consumer genetics companies must have been pleased to hear his generally up-beat views on their industry.
As for the database of information for consumers - we've seen this possibility mooted several times by different groups (both public and private), but little visible progress. Providing an objective guide to consumers seeking to navigate the complexities of DTC genetic testing would provide far more useful customer protection than excessively strict regulation. I hope we see genuine movement on this front in the very near future.
Life Science
Medicine & Health
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I know this isn't exactly what you describe, but The Genetic Alliance (geneticalliance.org) has a project going on called Access to Credible Genetics (ATCG) Resources Network. http://geneticalliance.org/ws_display.asp?filter=atcg
They've talked about various ways to approach this and I don't know what the current state is, but I thought it was a worthy idea.
Posted by: Mary | February 2, 2009 11:56 AM