HEALTH FUNDS: by News WeeklyNews Weekly
Will genetic tests lead to discrimination?
, April 22, 2000
The Investment and Financial Services Association (IFSA), which covers all the private health insurance funds, has applied to the Australian Competition and Consumer Commission seeking to establish an insurance industry standard, which in part would require that all new policy holders reveal the results of any genetic tests they have had conducted. The ACCC's interim decision is due soon.
The insurance industry is arguing that companies need the data to assess the potential risk to illness of a new policy holder, and that such information is no different from the requirement to disclose pre-existing illnesses and certain lifestyle risk factors such as smoking, or working as a test pilot, etc.
However, these arguments are disputable and raise a number of very serious ethical concerns.
Carrying a particular gene may increase the probability of a person developing a certain disability or illness but it is not the same as having a pre-existing condition or illness. Some defective genes influence the onset of illness far more consistently than others. Most serious conditions which are lethal or disabling to human beings are the result of the interaction of a number of different genes with certain environmental and lifestyle factors.
Genetic tests may warn a person of the risk of developing a particular illness but they cannot tell us how serious a particular condition will be, or when it will occur, or even if it will occur.
A few deadly conditions, such as Huntington's chorea, can be reliably identified early in life, but we have no idea at what stage in later life the degenerative disease will strike. Would it be just for insurance companies to increase premiums for children carrying the gene?
Science is also slowly discovering that while some genes may increase the risk of developing a condition, other genes can either repair defective genes, or counter the influence of a defective gene or fight conditions brought on by a defective gene.
Risk assessment from a genetic perspective is anything but precise.
The Association's move to require genetic disclosure could also have the effect of discouraging people from taking genetic tests for fear of them facing increased health insurance costs or being refused health insurance. Ironically, this may in fact place those people at greater health risk, and increase health costs. Not knowing about the presence of a defective gene or combination of genes, could deny people the chance to take preventative measures, such as altering their diet.
The insurance industry move is being driven by the explosive growth in genetic technology. The Human Genome Project has been a costly 12 year program to identify and understand all the genes that go to make up the genetic structure of the human being. Research has seen the rate of identification of genes associated with particular diseases far outstrip the development of techniques to prevent or treat those diseases - a process that will often be hugely expensive and could take many years.
In the meantime, screening and diagnosis is leading to the "easy solution" of identifying and destroying those with undesirable genetic differences before birth, or by screening would-be parents and "guiding" them towards IVF programs with donor sperm/eggs.
Pre-natal screening has already contributed to the abortion of 90-95% of all unborn Down Syndrome cases before 20 weeks gestation. In a recent case, an American woman with Huntington's chorea was informed by her insurance company that if she did not abort her child, the family's health insurance policy would be cancelled.
Although the IFSA says that the proposed industry standard would ban complying companies from making policy holders take new genetic tests, once there is a requirement to reveal past tests it is only short step to requiring genetic tests as a condition of obtaining a health insurance policy.
The purpose of insurance is to spread risk across the community, and that involves covering the most defenceless and vulnerable.
This principle is already being eroded to some degree by existing disclosure rules. While it is legitimate to require higher premiums from people who choose higher risk lifestyles, new rules about to take effect will discriminate against older people by making insurance more expensive for them relative to younger people.
If the IFSA proposal is not resisted now, genetic testing is likely to lead to a quantum leap in health insurance discrimination. People with Huntington's chorea are already paying higher health premiums with some insurers.
It is unjust to charge higher premiums on the basis of something over which the person has no control and which may never develop into an illness.
US President Bill Clinton has recently signed an executive order placing a five year moratorium on the use of genetic information to make decisions on the hiring or promotion of people in the US Federal public service. This is partly to build support for proposed legislation called the Genetic Non-Discrimination in Health Insurance and Employment Act of 1999.