In the news

At the request of the UK Government, the Human Genetics Commission has begun a consultation on the supply of genetic testing services direct to the public. Concern about this issue has increased since a UK-based company has begun to offer individual diet and lifestyle advice based on testing of a set of genetic polymorphisms (see item in May 2001 newsletter). A voluntary code of practice established in 1997 by the HGC’s predecessor body, the Advisory Committee on Genetic Testing, is now considered to be inadequate to deal with the wide range of genetic tests that might potentially be made available to the public. The consultation covers a broad range of questions including the scope of any regulation that might be required (should it, for example, be applied to DNA tests only or to all tests that directly reflect genetic factors?); how the term “direct to the public” should be defined (should it include tests that may in the future be offered by health professionals such as pharmacists?); whether genetic tests need special regulation beyond that applied to other types of health-related tests; whether direct genetic testing services should be limited to adults capable of giving informed consent; how genetic tests offered direct to the public should be evaluated; whether counselling should be mandatory; and what regulation there should be over the retention and use of samples and data by companies offering tests.

These questions lead up to the four main options under consideration: no specific regulation beyond that already afforded by existing legislation; voluntary regulation by the industry; voluntary regulation with some restriction on the types of tests that can be offered; or a strict system of regulation. Responses to the consultation should be sent to the HGC by 4 October 2002. In addition to considering written responses, the HGC intends to have face to face discussions with interested groups and individuals during the autumn and expects to report to Ministers by the end of this year.