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UK Bioethics Group Mulls Consumer Genomics

NEW YORK (GenomeWeb News) – A UK biomedical ethics group has started a consultation program with stakeholders in biomedical business and research to gather information on perceptions of personalized healthcare technologies, including DNA testing, body imaging, and telemedicine.

The Nuffield Council on Bioethics said on Tuesday that it will accept comments over the next three months as part of an effort to explore whether DNA testing and biomedical imaging technologies should be regulated.

The UK's National Health Service currently offers 300 different tests for disorders that are caused by mutations in single genes, according to the Nuffield Council, and the NHS makes these DNA tests available for genetic disorders only after evaluation by the UK Genetic Testing Network.

The UK GTN assesses a test's analytic and clinical validity, clinical utility, and its ethical, legal, and social implications, and passes that information on to the Genetics Commissioning Advisory Group, which then makes recommendations to the NHS. The Nuffield Council argued that while most DNA testing providers offer individualized health risk profiles, some "recreational genetics" services offer ancestry and genealogy tests, and others specialize in such services as finding romantic partners and finding out if one's children will be good at sports.

The Nuffield Council posed a number of questions for which it seeks public and stakeholder consultation, including:

• Have you used DNA profiling services? If so, how useful was the information you received? If not, what information would you want to receive in advance of the test and what information would be most useful after the test?

• Should DNA profiling technologies have to pass stringent evaluations before NHS agrees to provide them, but not before they are available on a commercial basis?

• DNA profiling tests could lead patients to take appropriate treatments, but also could lead to harmful actions, such as inappropriate self-medication, or people could become fatalistic and believe that there is no point in altering their lifestyles. The Nuffield Council asks if providers should be held responsible for such harms, and if so, in what circumstances would that be the case? And, if not, should the interests of vulnerable groups be safeguarded?

The council plans to produce a report based on these finding and release it in the spring of 2010.

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