News

A report published by the University of Michigan’s CS Mott Children’s Hospital National Poll on Children’s Health claims that 54% of the 1500 people who responded to the poll (out of a total of just over 2,000 questioned) thought that genetic testing for disease risk was worthwhile even in the absence of an effective treatment, while 30% would want genetic testing for themselves or their children only if an effective treatment were available. Opinion was fairly evenly divided on the question of whether parents would want their children’s DNA to be banked in a government facility so that testing could be carried out in future if a test linked to an effective treatment became available: 38% were willing, 33% unwilling and 29% unsure Those who carried out the poll speculate that reluctance to allow DNA to be stored for future testing could reflect concern about the potential for unfair discrimination, despite the likelihood that the US Federal Government will soon pass the Genetic Information Non-discrimination Act (see recent newsletter article).

The premises on which this poll was based merit some comment. The report of the poll’s findings states that Government-sponsored DNA biobanks such as UK Biobank aim to contact people in future if genetic tests become available from which they might benefit clinically. This is not the case: UK Biobank is a research resource only, and no results from the project will be fed back to participants. Nor will samples stored in Biobank be used for any clinical purpose.

The poll’s implication that parents have the right to decide to have their child’s DNA tested without any clear clinical purpose is also questionable. Professional guidelines on genetic testing of children generally discourage testing unless it is in the child’s current interests to have a test on which clinical management depends (see for example, the 1994 guidelines of the British Society for Human Genetics). In all other circumstances, ethicists and geneticists consider that testing should be deferred until the child him/herself can make an informed autonomous judgement. In the UK, taking and storing of children’s samples for DNA testing comes under the provisions of the Human Tissue Act and the Mental Capacity Act and would be unlikely to be legal in the sorts of circumstances described by the US poll.