The American Medical Association adopts policies on direct-to-consumer genetic testing

25 June 2008

The American Medical Association (AMA), the largest physician group in the US, held its Annual Meeting this month; among the policies adopted were recommendations relating to direct-to-consumer (DTC) advertising and provision of genetic tests (see press release). The AMA recommended that genetic testing should be carried out under the supervision of a qualified health care professional and physicians be provided with more information on the types of genetic tests available so that patients can be appropriately counselled on the potential harms. They also recommend that appropriate organizations should be encouraged to develop criteria for the advertising of DTC genetic tests. The American College of Medical Genetics released a policy statement in April containing similar views and similar recommendations have been made by a number of other organisations (see previous news).

The number of DTC genetic tests is steadily increasing and the clinical utility of these tests and the extent to which the public and clinicians are able to understand the information generated by them is unclear. Such concerns have led some states in the US such as New York and California to clamp down on companies which provide DTC genetic tests (see previous news). Health regulators in California have recently asked companies to halt sales of genetic tests until they prove that they have met state standards; among which is the requirement for the test to be ordered by a doctor (reported by the Guardian). 

In order to gain a better understanding of the value of genetic tests, the Coriell Institute for Medical Research in New Jersey, has launched a project whose goal is “to better understand the coming impact of genome-informed medical practice and to guide its ethical, legal and responsible implementation”. The Corriel Personalized Medicine Collaborative will offer free genetic testing to 10, 000 local volunteers and provide them with information about their risk of a number of condition (see news source). The information reported back to participants will not be as extensive as that provided by private companies, but will be restricted to information which is deemed by an advisory board to be medically actionable, as such the risk to conditions like Alzheimer’s disease which cannot be altered by lifestyle or medical interventions will not be revealed. In addition, a web portal allowing participants to share this information with their physician if they wish and containing educational material will also be launched. It is hoped that through this project the clinical utility of genetic susceptibility testing can be examined together with understanding the steps needed to incorporate them into clinical practice.

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