Genetics have been hitting the headlines in 2000 with news that insurance companies are likely to be given rights to ask prospective clients about genetic tests, and in February 2001 revealing findings about the human genetic map.

Doctors and scientists believe genetics - testing and altering genes - creates huge medical possibilities, imagining a time when they can eradicate certain conditions.

Meanwhile, increasing understanding of human genetics is seen by some to offer greater insight to individuals of future health. But what of other potential uses - insurance companies and employers want access to information about our genetic make-up - information that many people believe is personal. And lurking in the background is the sinister spectre of past forays into genetic manipulation and eugenics.

Eugenics was established by Francis Galton, a cousin of Charles Darwin. According to Daniel Kevles, in his 1986 book "In the name of eugenics. Genetics and the uses of human heredity" Galton intended this word to denote the 'science' of improving human stock by giving more suitable races or strains of blood a better chance of prevailing speedily over the less suitable. It is the definition of 'more suitable' that raises concerns, particularly amongst disabled people. Society continues to discriminate against them, and sees their lives as somehow less fulfilling than non-disabled people. Therefore fears exist that science's goal of genetic perfection could foster a eugenic approach towards those with a genetic pre-disposition towards "disability" at birth or in later life.

The British Council of Disabled People (BCODP) has produced a detailed discussion document on genetics and disability. It explains BCODP's fears - that society's cultural preference for normality, as many in the non-disabled majority see it, coupled with developments in genetics, could create huge social pressures to terminate pregnancies where genetic screening shows the foetus may be or become a disabled person. Already. Bob Edwards, UK pioneer of test tube babies, has been quoted as arguing that it will soon be a sin for parents to have a child that carries the heavy burden of genetic disease. If society accepts this, what are the implications for those who develop impairments in later life? It is unlikely to improve their lot.

These fears are founded in historical fact. Disabled people have faced state-sponsored programmes of sterilisation, and worse, before. Even now, in the UK's Human Fertilisation and Embryology Act (1990), termination of pregnancy are only allowed beyond the 24 week limit if there is a risk of serious impairment - but what constitutes a 'serious impairment'?

BCODP's concerns seem understandable. And it is not only disabled people who should be concerned - in March 2001 scientists have begun to question whether there is such a thing as the 'gay' gene.

BCODP is not trying to limit individual choice, or to say that the possible benefits of genetics should be abandoned or ignored. They are not against choice in pregnancy - but they want such choices to be made in light of factual, impartial information. As they point out, "there can be no real choice until women feel able to continue with a pregnancy, secure in the knowledge that they will be bringing a child into a society which positively welcomes all children and provides comprehensive systems of support."

But this is not the only issue arising from advances in genetics. Already, in the UK, government has accepted as inappropriate a permanent ban on genetic tests for insurance. They have created the Genetics and Insurance Committee (GAIC), to oversee and advise on applications from the insurance industry to utilise genetic information. GAIC sparked headlines in 2000 by backing an industry proposal to allow questions on past tests for Huntingdon's Disease. As yet, no-one is talking about insurers requiring people to take genetic screening tests - but that may be only a matter of time.

One of the main difficulties with genetic tests is that they are not conclusive. Many of the conditions that they appear to predict are not inevitable. They depend, rather, on the added interaction of environmental factors, many of which are not yet fully understood. Is it right, then, that individuals could become uninsurable because genetic tests reveal susceptibility to a condition that may never develop?

Another controversial area is the use of genetic tests in pre-employment enquiries. At present there are no proposals for employers to be granted access to such information. However, it may only be a matter of time before this is sought: employers will see advantages in knowing that one applicant for a job has a higher chance of developing, say, breast cancer, than another, as it may reduce sickness absence.

Currently in the UK the Disability Discrimination Act prohibits the less favourable treatment of disabled people in employment. But the definition of disability in the Act does not include those with a genetic pre-disposition towards particular conditions, or who may develop a condition in the future. We need to plan now to ensure adequate protections exist before such access is permitted.

It is not all bad news. At the recent Nice summit, leaders of the member states of the European Union considered a new Charter of Fundamental Rights for citizens. Article 21 prohibits discrimination on any ground and includes 'genetic feature'. In the UK, the Data Protection Commission is examining how the safeguards of the 1998 Data Protection Act extend to genetic information.

There is no doubt that issues raised by genetics and genetic research are ethical and moral minefields, in which we will have to be very careful where we, and others, tread. These could be testing times for all of us.

© PCS View; March 2001.


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