Let's hope it's not in our genes

By failing to control the use of genetic data, the Government will encourage discrimination, says Alastair Kent
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The Independent Online
Yesterday, the Government failed dismally to grasp an opportunity to prevent abuses of our rapidly developing knowledge of human genetics. By choosing to rely on existing mechanisms, which experts already regard as inadequate, the Government's official response to the report of the Science and Technology Select Committee on Human Genetics is deeply disappointing.

The news that the genetic code is being unravelled much faster than was originally thought possible must bring hope to the millions of people in families who are at risk from genetic disorders. Most of these are very rare, but together they are one of the major causes of ill health and disability in this country: more than 2.5 million people are members of families at risk from an inherited condition; 15,000 babies are born each year with significant disabilities, and almost half of all childhood deaths in Britain are the result of genetic disease.

Among the 200,000-odd genes that comprise our genetic code, we all have a few that - if we have children by a partner who carries the same defective genes - potentially produce disabling, life-threatening or even fatal conditions. As scientific understanding advances, more of the genes that increase the risk of our developing illnesses such as cancer or Alzheimer's disease are being discovered.

It is not all good news, though. Discovering the gene allows precise diagnosis, and will eventually lead to the development of new forms of therapy that will treat and perhaps even cure these conditions. But the gap between locating the gene and being able to cure the condition is a huge one. Gene therapy trials are at a very early stage, and it is not yet clear which conditions will be amenable to treatment. For the foreseeable future, the principle benefit of this new genetic knowledge will be antenatal diagnosis of affected pregnancies, giving parents the option of a termination.

Just as information about your genetic make-up gives you control over aspects of your life, so that same information in the wrong hands will give others power over you. Employers might, for example, want to know if female applicants had an increased risk of breast cancer, so they could choose not to employ them. Insurance companies might not want to provide cover for people at an increased risk of developing long-term diseases such as Alzheimer's. People with a genetic predisposition to certain forms of heart disease might not be able to afford to protect the payments on their mortgage because of the loaded premiums demanded.

Genetics will have an impact on all our lives. Scientific advances are coming too quickly for us to assimilate. Last summer, the Commons Select Committee on Science and Technology produced a report on the implications of our new knowledge. The report was widely welcomed and many urged the Government to act quickly, implement its recommendations and introduce powerful and effective monitoring and control to prevent the abuse of genetic information.

On Wednesday, the Government rejected virtually all the recommendations in the report, preferring to rely on existing mechanisms which, in the view of the Select Committee and others, are already inadequate. The Advisory Committee on Genetic Testing which actually is to be set up has far too narrow a remit so it will, in effect, be unable to address issues relating to employment, insurance and the non-medical uses of genetic information.

Last summer, the Government deliberately excluded those with genetic predispositions from protection under the Disability Discrimination Bill then being discussed in Parliament. The Government preferred, it said, to wait for the forthcoming Select Committee report. It is, therefore, all the more disappointing that it on Wednesday it again failed to provide for proper legislation to prevent genetic discrimination in employment.

Indeed, by turning its back on legislation, the Government has gone further and created a positive incentive to discriminate early, because it will not be possible for employers, insurers or any other service provider to do so once symptoms are manifest. The Government's response on Wednesday amounts to a Discriminator's Charter.

The writer is director of the Genetic Interest Group