The project has attracted criticism from some scientists, who think that its dependence on health information from family doctors, and lifestyle information provided by the participants themselves could produce unreliable results. Others have expressed concern over its costs, and the potential for misuse of the information gathered. To address privacy concerns, all the data collected will be anonymised, and no health information - good or bad - will be given back to participants. This means that there is no direct benefit to those taking part. Is it unrealistic to expect that potential participants will act so altruistically, especially since the research is setting out to provide answers to such vague questions?
Those who volunteer to take part in medical research usually do so because they need a bit of extra cash, or because they are patients with no other treatment options. But why should people agree to give up their time to contribute to a project with no immediate direct benefits - especially those in their sixties, who are least likely to be around when Biobank eventually bears fruit? Given the lack of an obvious incentive, is there instead a 'moral duty' to take part in such research, as argued by the ethicist John Harris in a paper published last year (Journal of Medical Ethics 31 (April 2005), p242-247)?
Harris says that anyone living in a society that has benefitted - or expects to benefit - from medical research has a 'positive moral obligation' to participate in it. This conclusion is based on two principles - that of doing no harm, and that of fairness. In other words, by not taking part we may deny others, including our descendants, the chance of future treatments or knowledge that could improve their health. What's more, we shouldn't expect a 'free ride' by leaving it to others to take part in research that produces medicines we all want access to, should we ever need them. He concludes that as long as participants are fully informed, and safeguards against wrongful use of data are in place, then people are morally obliged to take part in projects such as Biobank.
Perhaps most of the 500,000 people chosen to take part in Biobank will agree, and feel that helping others and 'doing their bit' are good enough reasons to participate, providing it causes only minor inconvenience. The project may even help foster a new attitude to medical science - that in order to reap the benefits of research, we must be prepared at least to support it, both as a society and as individuals.
Dr Jess Buxton is Contributing Editor at BioNews and a Trustee at the charity that publishes it, the Progress Educational Trust (PET). She is co-author of The Rough Guide to Genes and Cloning (buy this book from Amazon UK or Amazon USA) and Human Fertilisation and Embryology: Reproducing Regulation (buy this book from Amazon UK or Amazon USA).
