Human Genetics Commission

LONDON — The first annual report of the UK's Human Genetics Commission, (HGC) published on 28 September 2001, contains this unequivocal message: as the pace of change in genetic research quickens and the consequences become more widespread, the public will be consulted every step of the way.This quest for openness and public involvement is the overriding theme of the commission's report, entitled 'Debating the ethical future of human genetics'. After a year in which a great deal of effort went into finding out what people think about genetics, the commission is now in the process of setting up a 100-strong consultative panel comprising those directly affected by genetic disorders — plus family members and carers — to act as a sounding board for its reports and recommendations.This approach is undeniably the most democratic way of driving genetics forward. But it also throws up questions about whether the commission — set up to advise the UK government on the social impact of developments in genetics — will act as a stimulus or an obstacle to genetic research.Scientists co-opted onto the commission admit it has a difficult part to play in straddling the divide between the public concern over the speed and nature of developments in genetics, and the research community's eagerness to exploit those developments. But the consensus seems to be that science can ill-afford to ignore the public's fears, and even its misconceptions, about the perceived threats and opportunities of genetic research. "A lot of people think genetics is about a blood test that, for example, will determine their IQ," says HGC member Patrick Morrison, a clinical geneticist at Belfast City Hospital. "We are trying to get the message over that this is not the case. It's about getting the public educated and helping them to understand that a lot of science is very helpful and useful and needs to be done. "Genetics is simple — it's just that there's an awful lot of it. As a clinical geneticist I see people who are affected by genetic diseases all the time and I'm used to communicating ideas in a way that people can understand."In her introduction to the annual report, HGC chairwoman Baroness Helena Kennedy QC reinforces the importance of public involvement. "One aspect of our work which is of the greatest importance is openness. At the very beginning of our existence we made the decision to conduct our business in public. This involves inviting the public to all main meetings and publishing on our website all agendas, minutes and key background material. "Any major decisions which we reach are taken after full consultation with the public. This is a lengthy and sometimes fairly expensive process but it is one which I think must be an essential element in any modern policy-making process."In its first year, the commission polled 5,000 people on their views about genetics, launched a consultation document — 'Whose hands on your genes?' — designed to raise awareness about the storage, protection and use of personal genetic data and recommended to the Government a moratorium on the use of adverse genetic test results by insurance companies.It also got its teeth into the thorny subject of whether forensic DNA databases should be used in the fight against crime and set up a special 'horizon scanning' task group to pinpoint potentially controversial issues likely to crop up in the future.The commission's public poll revealed that while most people had deep reservations about genetics, they could still appreciate the potential benefits. Importantly, many said they felt they needed to be better informed.Ninety per cent of respondents agreed that developments in genetics should be used to cure diseases but a third also felt genetics research was 'tampering with nature' or 'unethical'.And most people said they had little or no confidence that rules and regulations were keeping pace with new scientific developments.Looking ahead, the commission hopes that its new consultative panel will give vital feedback on issues such as whether or not bosses should know if their employees are at risk of developing a genetic disease and if tests on unborn children for serious inherited disorders are helpful and wanted by parents.According to Morrison, the commission — comprising clinicians, medical ethicists and experts in medical law — also has an important part to play in controlling the 'maverick' element within genetic research. It's also important, he believes, that it is independent of government. "We can make recommendations and the government can reject them for all sorts of reasons. But we are not in anyone's pocket — we are pretty fair and impartial."Fellow commission member John Durant — Professor of Public Understanding of Science at Imperial College London — believes the backlash over the safety of GM foods is testimony to the dangers of not involving the public in the genetics debate. "The pace of change in genetic research is very great and so is the potential impact on everyday life. In an open and democratic society the public should be made aware of what's going on," he said. "But equally there's a reciprocal benefit for the scientific community, which is that what the public thinks and feels about issues does have a big impact on what actually happens. "I think we need a socially sensible policy for genetics, not just one that the scientific community can sign up to."Durant does not subscribe to the view that extensive public involvement will slow down the pace of change in genetics. Instead, he believes, a far greater threat to the advancement of science would the danger of a reaction from an ill-informed and isolated society. "The real risk is not that the pace of research will be slowed but that there will be a really significant backlash — and when you get that then you really do slow things down."

Human Genetics Commission

The first report from the Human Genetics Commission stresses the importance of openness and public consultation in future policy decisions.

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