The ethics and impact on behaviour of knowledge about one's own genome

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Abstract
“People need to know about their genes and be aware of diseases that may occur”; “the more information available the more informed choices are.” These positive comments on the value of genetic testing came from two visitors to a drop-in “gene shop” which gave information about genetics at Manchester airport, funded as part of the Euroscreen 2 project with staff from the Royal Manchester Children's Hospital Trust.1 They were typical of the visitors who were enthusiastic about testing for themselves and their partners. The Genetic Interest Group, many of whose members come from families affected by genetic disorders, is similarly enthusiastic arguing that “genetic services offer people the potential to acquire information about their genetic make up [which] although it might be bad news, at least allows them to plan out their lives and make informed reproductive decisions.”2 For those who are aware that they are at risk, a genetic test for a specific disorder may well be empowering—it will provide either reassurance or confirmation of that risk. But what would knowledge of their own genetic make up mean for the general population? The attraction of genetic testing for the health service is the ability to predict; as the Advisory Council on Genetic Testing put it, to “foretell the future with scientific confidence.”3 The possibilities of preventing the onset of a genetic disease and of developing drugs tailored to the individual's genome are promising; at the moment, though, the ability to detect a disorder is outstripping the development of effective treatment. The problems of making a diagnosis, in a currently healthy person, of high risk for a disease that cannot be prevented and may even be untreatable are recognised in the present system. Information, counselling, and support are offered before the individual can decide to be tested, …