Call to bar genetic test results for insurance firms: Report calls for central body to regulate bioethics
The Nuffield Council on Bioethics yesterday called for the Government to guard against the threat of social stigma and abuse that could result from widespread genetic screening.
In its report published yesterday, the council recommended that the Government should set up a top-level 'central co-ordinating body' to oversee the new technology of genetic testing and to monitor how it is implemented, not only in the NHS but also in the insurance industry and in the workplace.
Caroline Miles, one of the members of the council, warned that the introduction of genetic testing 'will be a disaster, if it is not properly planned and introduced'.
Mrs Miles, who is a former chairman of Oxfordshire Health Authority, recalled that screening for cervical cancer was introduced haphazardly, causing many women severe distress. She said the lesson was that a national genetics screening programme 'has to be properly thought through: how you are going to do it, where it is to be done, and how it is to be paid for'. The Nuffield Council report calls for safeguards by government, doctors and nurses, employers and the insurance industry to protect individuals and their families against adverse effects of genetic screening. Among the potential problems it identifies are invasions of genetic privacy, the misuse of confidential information, the risk of social stigmatisation, and the possibilities of eugenic abuse in the future.
Professor Dame June Lloyd, who chaired the council's working group on genetic screening which produced yesterday's report, said: 'Genetic screening must be entirely voluntary - there can be no compulsion. Individuals need information so that they can give informed consent, and counselling is also vital.'
However, the council's proposed ban on insurance companies getting access to the results of genetic tests would be a temporary one, pending discussion between the insurance industry and government.
Over the past decade, a series of discoveries including the gene responsible for cystic fibrosis - the most common single-gene defect in Britain - and the genetic basis for other inherited disorders, has opened the way to testing people who might be at risk either of developing disease later in life or of bearing children who suffer from disease.
Currently, genetic testing is offered to people who have a family history of inherited disease, but proposals are now being put forward for genetic screening - testing the population at large to pick out individuals who previously did not know that they were at risk of genetic disease. Professor Lloyd said: 'We have to have safeguards in place before it all comes rushing in on us.'
One of the worries is that people might be denied insurance for a mortgage or pension plan because of an adverse genetic inheritance for which they were not responsible as individuals and over which they had no control.
A spokeswoman for the Association of British Insurers said yesterday that for the present, there was no question of anyone being asked to undergo a genetic test as a condition of getting insurance. But anyone who had already undergone a test would have to disclose the result, she said, just as they would be expected to make their medical records available.
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