Private genetic tests, and the case for ‘Genetic education’

An advisory body to the UK government, the Human Genetics Commission has called for more regulation of genetic tests that are available for the public to buy privately.

The completion of the human genome project, and the advances (and economies) in genetic technology have led to a burgeoning industry in private genetic tests. In the US especially, but increasingly also in Europe it is possible to order a wide range of tests for genes associated with risk of disease.

It is argued that tests with significant health implications should not be advertised to the public, and should be available only through a medical practitioner. But is this attitude to testing unduly paternalistic? Is greater regulation a realistic response?

It is prudent and rational in a public health system for funding to be limited to tests that have been shown to be clinically relevant and important. However for tests that are available privately the justification for limiting or controlling access to them cannot be on economic grounds. It is usually based upon a concern that individuals will be harmed by the results of those tests. That could be because of misunderstanding the meaning of the tests (either needless anxiety, or false reassurance), or perhaps that the test results may lead to stigmatisation of that individual (with social or insurance-related consequences). There are also claims that the advertising of such tests may be misleading or exploitative.

It seems reasonable to require genetic testing companies to avoid using claims in advertising that are misleading or which cannot be substantiated. (Though this requirement is not particular to genetic tests – it would apply to equally to other health services such as complementary medical therapies or medicines, or indeed to most products advertised in the marketplace.) But to restrict access to testing can be seen to be limiting the ability of individuals to freely choose what information about themselves (and their genes) they wish to know. This is to overrule the autonomy of individuals on the basis that they are not capable of making such choices, or that they may make poor choices. We would need to weigh up the value of individual freedom against the potential harms of freely available genetic testing.

But there is a more important and practical reason for thinking that increased regulation and restricting access is not a sensible approach to this problem. Advances in technology mean that genetic tests are very simple for the individual to undertake (for example all it might take would be to swirl a brush on the inside of your cheek), and they are become much cheaper to perform. It is already possible and straightforward to order tests from a laboratory overseas. Therefore regulations affecting companies in the UK will not prevent people from accessing genetic tests.

So if it were important to prevent harms from genetic testing, then it would be better to focus on those harms. In clinical genetic testing, counselling of patients both before and after a test is the most important way to prevent harm from the information. For private genetic tests, regulation will not be able to ensure that this takes place. Instead perhaps there is a need for ‘genetic education’ for secondary school students (as well as the broader community), and a widened availability of genetic counselling services for people who are thinking about ordering genetic tests, or need advice on how to interpret results.

News article from the BBC
Press release from the Human Genetics Commission

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