Gene passport prospects raise concerns

Within 20 years newborn babies may be issued with genetic identity cards which spell out their potential future health, a development which may lead to a genetic underclass unless the issue is properly debated, the head of one of Britain’s leading research charities has warned. Sir Paul Nurse, head of Cancer Research UK and 2001 Nobel prizewinner and also chair of the Royal Society’s science in society programme, recently held a ‘people’s science summit’ on genetic testing. Britain is considered in the vanguard of countries addressing both the potential and pitfalls in new developments in biology and medicine. In future, routine tests could offer a rundown of each and every gene in a newborn child. The fear is that without proper debate and public education people may be ‘written off’ by insurers and employers because of their DNA inheritance. The US scientist Craig Venter is already offering the very rich the chance to buy a map of their genomes at more than half a million dollars, but even he anticipates selling them for much less in years to come, Nurse says. “Therefore it seems reasonable to imagine genome sequencing happening as a matter of routine in 20 years’ time. Likewise, the number of genetic tests available is quickly increasing.” The summit considered a number of issues: who should decide whether genetic testing should take place, what legislation and regulation we need, what kind of education and information people need to deal with these tests, how these tests impact on health and well-being? “Is it ethical? What is their quality and validity? Who is driving the agenda? What are the problems of discrimination that could come out of this? “The aim is to air the problems, and see what the public thinks about them. This is listening rather than lecturing. This issue is too important to be left to scientists and policy-makers alone.” There were clear benefits in genetic knowledge, he said. Two gene mutations linked to breast cancer had been identified: women who inherit them can get counselling and guidance on how best to reduce the risk. “But there is the downside of a genetic underclass, those who would not be thought good for certain jobs, or be a bigger insurance risk. And then there are the psychological problems: how do people deal with the knowledge that they might die at 23 or have some ghastly disease when they are 56? “There are some conditions – such as Huntington’s disease and cystic fibrosis – that are caused by a mutation in a single gene, where a genetic test can determine whether a person will develop the disease in later life. “But most genetic tests can only indicate whether or not there is an increased risk, and not whether there is certainty of developing the disease. There is also added complexity brought about by lifestyle factors – factors we are only just beginning to understand – which may dramatically alter that risk assessment.” Given this complexity, “we need to be extremely careful how this technology is used to shape our society,” he said. “This is why it is so important to have proper public debate – we need to discuss what genetics can and can’t deliver and what sort of society we want as a result.” News focus