Private genetic tests
HGC statement on private genetic testing services
In recent weeks, the HGC has become aware of various genetic testing services promoting their activities through television and other media. Concerns have been raised regarding the tests’ efficacy, utility and implications for individuals and their families. It is over four years since Human Genetics Commission published its report, Genes Direct, Ensuring the effective oversight of genetic tests supplied directly to the public. Those years have seen a consistent increase in the number of genetic tests on the open market.
Tests that claim to predict the onset of disease or indicate a heightened risk of serious conditions, or, alternatively, to offer peace of mind and the promise of a long and active retirement can significantly influence choices that profoundly and enduringly affect an individual’s health. There needs to be evidence that the tests accurately and reliably predict what they are advertised as predicting. They also need to be provided in the context of proper consultation where their implications can be discussed and managed. Aggressively marketed tests, for which evidence of their usefulness is limited or absent, may heighten anxieties about health or lead to inappropriate requests for further medical tests or treatment. Alternatively, it may encourage a complacent disregard for the effects of an unhealthy lifestyle and may lead to a loss of trust amongst the general public in the potential advances that may arise from the scientific discoveries.
In most cases, a healthy lifestyle, which includes regular exercise, a healthy diet, no more than moderate alcohol intake and no smoking, will have far more influence on a person's health than the small modification of risk that may be result from the inheritance of certain predisposition genes. In a small number of families, however, there may be very important genetic conditions which are purely determined by the inheritance of a single gene – these genes are not included in the tests currently offered by commercial genetic testing companies. If someone has a significant family history of a certain condition their family history should be carefully evaluated by a clinical geneticist before a decision is made about genetic testing.
For individuals thinking of buying a genetic test we have produced a list of questions that may help you make a decision as to whether the test is right for you.
The HGC is not a regulatory body or a licensing authority. It would not be appropriate for us to single out particular companies or tests. However we note and support the concerns raised and are actively working with other bodies to ensure the effective oversight of genetic tests provided directly to the public. Next month the HGC will publish a follow-up report on developments since Genes Direct (2003). The report will contain the Commission's latest recommendations relating to private genetic testing.
23 November 2007