An Eye on GeneWatch
The Council for Responsible Genetics’(CRG) recently released issue of GeneWatch covers the controversial direct-to-consumer (DTC) genetic testing industry. In a number of essays and interviews, it provides readers a range of perspectives. Though CRG has criticized many aspects of DTC gene tests, board member Paul Billings is supportive:
In my view, more knowledge and more highly empowered, well-informed independently acting consumers are needed to push improvements in genomic medicine and in all aspects of health care. DTC genomics is part of that.
The issue also includes an interview with 23andMe’s Anne Wojcicki and Ashley Gould, who are unsurprisingly enthusiastic about DTC gene tests.
Other articles are more critical. In another interview, President of the National Society of Genetic Counselors Elizabeth Kearney argues that DTC tests need to be coupled with independent genetic counseling. CRG board chair and Tufts University professor Sheldon Krimsky raises a number of concerns in a contribution titled “Not What the Doctor Ordered:”
[I]t is easy for DTC advertisers of genetic tests to overstate the significance of the test result, particularly those tests for which reliability has not been certified and standardization has not been set by a professional genetics association. Consumers of DTC genetic tests are on their own in what they purchase (caveat emptor) and what they read about the product claims (caveat lector).
CRG President Jeremy Gruber warns about privacy risks:
Purchasing genetic testing services in an online commercial marketplace raises significant privacy concerns, as consumers may turn over their DNA and other personally identifiable information to companies without a clear understanding of the privacy risks and without clear guidance as to their legal and regulatory rights in this area.
Dr. James Evans, who directs the Clinical Cancer Genetics Services at the University of North Carolina and testified at the congressional hearings on DTC testing in July questions the claims made by DTC companies:
The three big players in this field, the top strata of these companies, are doing a fine job of telling you reliably which nucleotide you have at a given position, but all of these companies make implicit and explicit claims that the information will improve your health… and, frankly, there is no evidence that this is the case.
Previously on Biopolitical Times: