The Threat of Genetic Discrimination
Statement of Dr. David King at CAHGE press conference 14/6/00
The Human Genome Project has produced a mountain of information that it will take scientists decades to analyse. The most immediate use of this information is in genetic testing, and we are promised that these tests will tell us much about our future health. Such information is not only of personal interest to us: employers, insurers and many other institutions may want to know. If privacy is not ensured, and institutions are not restrained from using the information in their own interest, the result will be genetic discrimination.
This is not a futuristic possibility: surveys in the USA show that nearly 50% of people with genetic disorders in their families had been discriminated against by insurers. In the UK one-third of the people surveyed had problems with insurance, and 13 percent of those were at no risk of developing gene-related health problems. Cases of discrimination by employers have also been reported. There is a large amount of research aimed at discovering genetic differences in people's susceptibility to environmental chemicals, including chemicals found in the workplace, and it is likely that employers will want to use genetic tests to exclude those who are susceptible, rather than clean up their workplace.
It has recently become clear that people seeking to adopt children in the USA are increasingly demanding genetic tests on the child, in order to make sure that he/she will not become disabled. If genetic testing becomes widespread, individuals may find themselves becoming socially stigmatised, due to rumours about their genetic constitution, and in the extreme case, as depicted in the film GATTACA, a genetic underclass may develop.
The fear of discrimination amongst patients is so widespread that doctors are already reporting that patients are unwilling to take genetic tests for fear that it will affect their insurance prospects. In the USA with its private health insurance system this problem is particularly severe. In fact, scientists and doctors have taken the lead in calling for a ban on the use of genetic information by insurers.
The problem will become most severe when genetic tests for susceptibility to common disorders such as heart disease become available. Because of the complexity of genetic determination, there is a debate amongst scientists about the likelihood of this. However, given the speed of scientific advance in genetics, it would be unwise to be complacent about this.
In response to pressure from scientists and the public to ban the use of genetic tests insurance, the insurance industry has lobbied government to prevent such a ban. The industry argues that if people have genetic test results suggesting that they may become ill or die, then they may take out large policies, which will have disastrous consequences for the industry. However, they have not produced evidence that this is likely to be a severe problem. It could only become a problem if there developed a market for private, over-the-counter genetic testing, which should be prevented for many other reasons. Furthermore, the insurance industry could protect itself through a reinsurance pool.
It seems clear that the industry's hostility to a ban on the use of genetic tests is part of its overall hostility to government regulation. In the USA, whilst various states have passed laws banning genetic discrimination by insurers, the industry has succeeded in preventing the passage of comprehensive federal anti-discrimination legislation. In Britain, in order to prevent a ban, the industry has compromised by promising not to use genetic test results for underwriting mortgage-related life insurance policies of under £100,000. However, it insists on receiving the results of such tests. The government is co-operating with the insurance industry in paving the way for the expanded use of genetic tests in insurance. Last year, the government's Human Genetics Advisory Commission issued a report on genetic testing in employment which left the door open for widespread testing.
The insurance industry is currently mounting a sophisticated PR campaign to assuage fears of genetic discrimination, claiming that it will be able to insure even those with genetic susceptibilities to e.g. Alzheimer's disease. However, these claims are based on mathematical models which incorporate implausible assumptions. The scale of the problem depends on government policies concerning the NHS, and also on the insurance industry's maintenance of its system of pooling risks. If, as in the USA, it moves towards greater differentiation between individuals, a trend which is likely to be partly driven by genetics, these assurances could prove false.
The Campaign Against Human Genetic Engineering believes that genetic discrimination is unacceptable, and is a serious threat which can only be addressed by a comprehensive legal ban.