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Ethical worries and medical databases

14 February 2000
By Juliet Tizzard
Director, Progress Educational Trust
Appeared in BioNews 45
At the top of the front page of this Sunday's Observer, a headline ran: 'Ethics fear over mass gene bank'. By reading the headline alone, it wasn't at all clear what the article was about - but it didn't sound good. Reading the front page article, however, and the rather better one printed inside made me realise that the 'mass gene bank' being proposed wasn't half as sinister as the headline suggested.

People involved in science (and probably every other sector as well) are often heard bemoaning the linguistic excesses of newspaper sub-editors. Catchy headlines rarely capture the essence of a story and often completely distort them. But apart from illustrating this perennial problem in newspaper journalism, the Observer headline highlighted another feature of science reporting. That is that the emphasis is usually placed upon the negative - rather than the positive - aspects of a new technology or a piece of research. Just as with many other biomedical developments, the MRC/Wellcome Trust plan to collect genetic information from half a million UK residents was immediately problematised.

Commentators are worried about a number of aspects of the proposed medical database. The main concern is how the information collected will be used - and by whom. Comparisons have been made with the experience of Iceland, where access to medical information about the country's 270,000 inhabitants has been granted to a private company, deCODE Genetics. But the British proposal differs from the Icelandic one in two ways. First, patients will be asked if they wish to take part in the research. In Iceland, patients have to make a specific request to opt out of participation in the research. The second difference is that in Britain, information may be made available to pharmaceutical companies at the discretion of the government. In Iceland, the information goes straight into private hands.

One other issue which will arise during the collection of such rich medical information is whether patients should be informed of what is found. What, for instance, should a research do if a particular patient's DNA shows that he has a significant chance of developing a particular disease? Should the patients be told? One sensible option might be to keep information collected during research anonymised, but to offer the testing again if the research reveals a significant level of information which might be relevant to patients. Patients would then know when they are consenting to tests which might uncover information pertinent to their health and wellbeing.

The collection of medical information of this kind on a large scale does pose a number of practical and ethical issues. But they are all issues which we can overcome by thinking through the ramifications beforehand. This research should, for ethical reasons, go ahead because it will provide information that is too useful to be ignored.

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