Francis Collins, former Director of the National Human Genome Research Institute, in a presentation last week (as reported by GenomeWeb Daily News):
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
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.