The cochlear amplifier

One of the challenges for developments in genetic research is that new information can help and hinder in the broader scheme of things. For example, the insurance industry is based on a paradox: it benefits from knowlege in determinig risk, but it also depends on ignorance. If we had complete knowledge of outcomes, life insurance would become impossible. Those whose genetic constitution promised long life would not buy it, and no one would sell it to those who really needed it. These are some of the fears aired in recent efforts in Britain to establish in law a person’s right to genetic confidentiality championed by Sir John Sulston, who headed Brtain’s human genome sequencing effort. The British government’s Human Genetics Commission is now considering proposals for a law to prevent people being discriminated against on the basis of their genetic make-up. The issue is particularly pressing, as the country last month also established the first national stem-cell bank, called Biobank. Researchers are worried that the full potential of the Biobank and other genetic research will not be realised unless patients are confident their genetic data remain confidential. The proposed legislation is designed to prevent the emergence of a genetic underclass, where people find themselves rejected by employers and unable to get life insurance. The proposal comes from Sulston, the Nobel prize-winning scientist, who is a member of the Human Genetics Commission. He has asked the committee to back his call for a tough mandate on genetic equity to prevent medical data from genetic tests being misused by companies. ‘With scientists’ rapidly increasing ability to analyse genetic information, the time has come to extend the concept of genetic equity to all genetic charactereistics, so as to guarantee non-discrimination to everyone,’ the document says. The proposal was submitted with the backing of John Harris, a Manchester Law School professor and adviser to the British Medical Association, and Simona Giordino, a bioethicist at Manchester, both of whom sit on the commission. The proposal states: ‘We affirm that humans are born equal, that they are entitled to equality of opportunity, and that neither genetic constitution nor genetic knowledge should be used to limit that equality... this principle should be incorporated into UK legislation and practice.’ Concerns are growing about the situation already developing in the US, where health insurance is increasingly confined to those who least need it. The pressure group Genewatch welcomed the proposal. ‘If you have a genetic test that predicts you might get ill in the future, currently your employer could refuse you a job or restrict your pension rights. That’s something that should definitely be prevented by legislation’, a spokesperson said. A moratorium is in place to prevent insurance companies from using genetic tests, except for Huntingdon’s disease, to influence whom they insure and the premiums charged. But the agreement is set to end in 2006. `So there is a clear benefit to society in ensuring that insurance is available to everyone.. where the ability to own a house is dependent on getting an insurance policy with your mortgage,’ one newspaper commented. Suspicion surrounding genetic tests could be enough to stop some people from seeking them, even when it could bring medical benefit, Sulston believes, preventing the huge progress made in genetics in recent years being exploited to the full. Quick guide