Would you take a gene test if you knew you carried the risk of developing an inherited disease? Would you give your insurance company the results or would you even tell them that you took a test?
People are already facing these difficult decisions and the situation will only become more complicated as the scientific understanding of human genetics increases.
Genes associated with cystic fibrosis, Huntington's disease, retinitus pigmentosa and other inherited diseases have already been discovered. In the future your gene profile will tell doctors your risk of developing heart disease, getting cancer or even your likelihood of living to a ripe old age.
Those who take out insurance are already required by existing insurance company law to reveal details of their medical history. Under the concept of a "contract of utmost good faith" failure to tell the truth as you know it allows the company to void the policy even if you have paid into it for decades.
Now however the situation is becoming daily more difficult by the growing availability of genetic tests. Should these details too, the inner workings of our bodies and our physical being, be yielded up to insurance companies?
Once again the science of genetics is racing ahead of our legislators. Genetic testing is already upon us but there are no regulations governing who, if anyone, has a right to demand test results and under what conditions.
Any insurance company could tomorrow require you to give up gene test results. "As things stand there is nothing preventing us looking for the results of genetic tests," says Jennifer Hoban, life assurance manager with the Irish Insurance Federation, the trade body for insurers here.
"Under the moral principle whereby the person is legally required to reveal details of their health, we would also expect people to tell us about genetic tests," she says. The companies here however are not yet asking for test results and are not demanding that people with a known genetic risk take a test.
Can such a situation be far away however? Late last week the Genetics and Insurance Committee, an advisory body reporting to the UK Department of Health, gave insurers the legal permission to ask new policy holders whether they had taken a gene test for an invariably fatal degenerative disorder, Huntington's disease, and to acquire the results of the test.
Only two years ago another UK advisory body, the Human Genetics Advisory Commission, recommended a moratorium on the use of information from such tests. This view was however rejected by the UK government which decided that insurers should have access to genetic information.
Insurers don't want this information to disadvantage policy holders, Hoban explains, rather to protect companies against being disadvantaged by not knowing about a risk. Gene tests, she says, have "upset the balance" which existed when neither the company nor the individual knew their gene status.
She believes that more extensive gene testing will come and when it does things will change for the industry. "If genetic testing becomes commonplace in other areas of our lives then this may have a knock-on effect on insurance. Insurance will reflect what is happening in the rest of the world."
Researchers involved in genetic studies and those providing testing for patients are very unhappy about companies gaining access to this sensitive information. "I have quite a bit of concern about it," says Prof Andrew Green, director of the National Centre for Medical Genetics at Our Lady's Hospital, Crumlin, which carries out gene testing here.
"I think the Government should introduce regulations. The insurance companies shouldn't regulate themselves in this matter. I don't think people should be in a position to coerce people into tests," he says.
The Republic is in a complex position given the fact that so many of our insurers are British-based and the UK, he says, is taking a more company-based approach than other EU states. "I think that some countries have actually taken practical steps and the UK is out of line," he says. Germany, France and the Netherlands have passed regulations blocking access to a person's genetic information. Last week's decision in London runs counter to this approach.
Allowing access to information might mean that people will avoid taking gene tests, Prof Green says. He knows of one person with a known colon-cancer risk who declined a test against advice specifically because he feared being refused insurance if the results became known. He subsequently developed cancer.
On the other hand many people do better by not knowing. A poll of individuals at risk of Huntington's disease showed that 60 per cent said, before a test was available, that they were willing to take one. When a test was later developed only 20 per cent of those polled actually took the test. "It is important that people have the option of not finding out," Prof Green says.
Bernie Moran, the development officer of the Huntington's Disease Association of Ireland, travels to Brussels next week to attend a conference on "pre-implantation diagnosis" - the ability to check a test-tube embryo for inherited diseases before it is implanted in the womb. She believes that if this facility had been available some years ago, many of her friends and colleagues at risk of the disease might not be here.
There could be a genetic cure in a few years, but with modern testing there will be more pressure to get rid of those at risk, she says. "People with the disease have had a quality of life," she says. "It is eugenics if you rule them out." The UK decision, she believes, will cause a move towards giving genetic information to companies. "It is really the legislation of genetic discrimination."
