Tracking genes and disease

LONDON — Trust that between patients and their doctors could be severely undermined by the plans to set up Biobank UK — a national genetic library of DNA from over half-a-million people, GeneWatch UK has warned.GeneWatch UK, an independent organization that monitors the ethics and risks of genetic engineering, has suggested that public trust in the medical profession could be 'severely damaged' if — as it fears — patients end up being harmed rather than helped by the project. The organization is concerned that proper legal safeguards are not being put in place to prevent commercial interests — such as employers and insurers — exploiting the information contained in the genetic library for their own financial benefit. At the very least, GeneWatch UK wants stringent measures put in place before Biobank UK even gets off the ground. Better still, it argues that there should be a national debate about whether potential medical benefits of a genetic databank really do outweigh the risks of commercial exploitation.Biobank UK — a £60 million project — is being developed jointly by the Wellcome Trust, the Medical Research Council (MRC) and the Department of Health. The aim is to collect blood samples from 500,000 healthy volunteers aged between 45 and 64 and extract the DNA for storage. Eventually, it's rumoured that the plan is to extend the project to the entire UK population. Lifestyle and demographic information would also be collated and, over the following decades, researchers would monitor disease patterns in a bid to investigate the interaction between genes and the environment and the consequences for illnesses including cardiovascular disease and cancer.The project is still at the planning stage and work has only recently been completed on gleaning the views of those — mostly the public — who would be involved. The MRC has already given assurances that private information would not be passed on to insurers or employers. But despite this, GeneWatch UK has compiled a report — 'Giving your genes to Biobank UK: Questions to Ask' — which it says highlights the lack of legal safeguards and warns that unless there is adequate legal protection to begin with, the whole project could be flawed.Some of its concerns have been expressed before in the debate about genetic research. They include the prospect of a 'genetic underclass' who are excluded from jobs or insurance because they have the 'wrong genes', fears that companies will privatise people's genes by patenting them, the use of genetic information for research purposes that volunteers do not agree with — such as projects on sexuality or intelligence — and the possibility that the police or Government might have access to genetic test results. "Public trust in doctors could be severely damaged if patients are harmed instead of helped by this research," suggested Helen Wallace, deputy director of GeneWatch UK. "A legal ban on genetic discrimination must be in place before research begins. Biobank UK could become a gravy train for commercial companies, including those whose products or pollution can cause death and sickness. Patents on genes block others from developing new treatments for 20 years or more and this kind of profiteering should be banned before doctors ask their patients to give samples."GeneWatch UK highlighted several reasons why it fears the abuse of genetic data. Firstly, the UK Government has not yet signed or ratified a European Convention on Human Rights and Biomedicine, which bans genetic discrimination. Secondly, it has only agreed a five-year moratorium on the use of genetic tests with the insurance industry. In addition, there is no law in the UK banning employers from using genetic tests and no specific law covering the privacy of genetic information — which means that companies can patent an individual's genes without them even knowing.But beyond that, Wallace added, there are deep concerns about whether the potential scientific benefits of Biobank UK are really so great that they outweigh the risk to individual privacy and rights.GeneWatch UK believes that in other countries with similar databases, such as Iceland or Tonga, the fact that they have 'isolated' gene pools means there is tremendous potential for disease research. But it questions whether the same benefits can be found in a multi-cultural, multi-racial society such as Britain, where genetic information from population DNA studies is likely to be much more complex. This question, it says, is particularly relevant when studying the 'big killers' such as heart disease or cancer, where environmental factors might have as much, or even more, influence as genetics on incidence and risk. "There will be medical advances (from the project) but they will be mainly in single-gene diseases, or inherited diseases," said Wallace. "Once you start moving on to multi-factorial conditions like heart disease and cancer, you might gain some understanding of the mechanisms of the diseases but it's questionable whether studies on these half-a-million people will tell us any more than we already know." She insisted that having proper legal safeguards would not automatically mean obstructing research. "Banning genetic discrimination by employers or insurers is not going to harm genetic research. In fact it's going to help — it will reassure people so that they can give samples without any comeback."But, Miguel Seabra, Professor of Cell and Molecular Biology at Imperial College of Science, Technology and Medicine, London, questioned whether it would be feasible to have all the legal frameworks in place before research can proceed. "My feeling is we should not be cavalier about this but trying to get it set in legislation would lead to lots of stalling and severe delays in scientific progress. The law needs to evolve because it would be impossible to have it all cleared up beforehand."Seabra agreed that it was 'debatable' whether the money spent on the project would eventually turn out to represent good value. But he was in no doubt that it would be a useful asset for the research community. "I see a lot of different researchers who would be interested in this genetic databank from different perspectives. It seems to me like a reasonable and interesting project," he concluded.

Tracking genes and disease

Plans to establish a UK gene bank reopen the debates on data transparency and patient confidentiality.

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