Nuffield Council voices critical concerns on DTC gene tests

Posted by Doug Pet October 14, 2010
Biopolitical Times
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The London-based Nuffield Council on Bioethics issued a press release this week announcing a new 252-page report, "Medical profiling and online medicine: The ethics of 'personalised healthcare' in a consumer age [pdf]." The key message is a call for aggressive oversight and regulation of direct-to-consumer (DTC) gene tests:
[C]laims that these services are leading to a new era of 'personalised healthcare' are overstated and should be treated with caution. The Council recommends that regulators of these services and advertising regulators should request evidence to back up the claims made by companies."
As it currently stands, consumers are on own to make sense of the test with the DTC companies' web pages, in many cases, as their only resource.
Commercial genetic profiling services may seem to be providing more choice to consumers, but the test results can be unreliable and difficult to interpret and they are often offered to people with little or no genetic counselling or support.
The report compares the risks of free-market gene testing to those of DTC CT, MRI, and ultrasound body scans. It judiciously calls for the involvement of the government and medical professionals in communicating risks and interpreting test results. It likewise considers how such tests could unjustly strain the resources of a strained healthcare system.
It would be unfair for people to be referred unnecessarily for specialist treatment on the NHS as a result of their genetic profiling or body imaging service that they have purchased, ahead of others who have not done so, or don't have the means to.
The report also considers other concerns such as consumer privacy, genetic information disclosure to insurance companies and employers, and the risk of consumer anxiety or false reassurance.

As the FDA deliberates on the DTC gene testing issue in the U.S. context, we hope that they will think long and hard about all these concerns, and incorporate their importance in its policies.