Discrimination because of genetic disorder

09-11-2005

Science, Gentests could create new class distinction

'Employers or insurers can ask for information about the cause of death of parents or other family members in their questionnaires and use that information'

Genetically discriminated

Discrimination based on skin colour, sexual orientation or gender has always existed, and it is hard to stop. As science develops, a new, more hidden kind of discrimination comes into being: genetic discrimination. The largest research ever about the consequences of genetic tests shows that one out of twelve tested Australians was afterwards turned down for a job or life insurance. A new gap is growing, even in Belgium: the gap between genetic supermen and unlucky persons with a predisposition for some disease. By Sara De Sloover

Australian researchers interviewed more than a thousand people who did a predictive genetic test once in their life to detect serious illnesses such as cancer or brain diseases. In the last edition of New Scientist their results were published. Most respondents were very happy to have done the test, because of the information they got about their health. However, 87 people, 7.3 percent of the people interviewed, mentioned that they were turned down for a job or insurance because of the test results. Nobody filed a formal complaint because they dreaded the extra stress, emotions and bureaucratic fuss that would come with it.

The accusation as such is not new. It is new that the Australian insurance business agreed to cooperate, which made it possible to investigate the accusations. Until now the research about confidential genetic information was anonymous, allowing employers and insurers to simply wave aside complaints. It was very rare for a case to be brought to court. Chief researcher Kristine Barlow-Stewart and her team are now challenging in court a case about a woman who tested positive for a genetic variant that causes a higher risk of breast and ovarian cancer. This woman's life insurer even refused her coverage for any type of cancer.

People who have aggressive forms of cancer or a muscle disease run in their families have the choice to know more about their personal situation, or not. This is also the case in Belgium. "Most often we test for breast or colon cancer", explains geneticist Bart Loeys (University of Ghent, Belgium). "Or neurological disorders, like Huntington's disease. This test can tell high risk patients with 100 percent certainty if they will get the disease or not."

The results of the genetic tests are strictly forbidden terrain for insurers and employers. That is what our law prescribes. At first sight that is a very secure protection against abuse of genetic information. However, there are loopholes, according to professor of medical law, Herman Nys, who works at the Center for Bioethics and Law at the Catholic University of Leuven, Belgium. "Employers or insurers can ask information about the cause of death of parents or other family members, and use that information. During the job application process some employers also ask if the candidate has done a genetic test."

Doctors and ethicists are very worried about the implications of such tests. The Belgian non-profit organization 'De Maakbare Mens', that focuses on questions about bioethics, interviewed 375 students of the faculty of medicine and moral sciences last year about genetic research. No less than 76 percent of the future doctors and ethicists think that "the free access of third parties to the results of genetic tests will create a genetic underclass through stigma". Eighty-seven percent of the students would withhold the information to insurers and not tell them about potential genetic diseases that run in the family. That of course has a downside as well. "If seriously ill people collectively withhold that information when applying for a life insurance, social solidarity will pay too high a price", warns philosopher Johan Braeckman (University of Ghent). "Their children will get the insurance money, but their insurers risk to go bankrupt."

Herman Nys cannot remember any court case about genetic discrimination. "However, because Belgian insurers are not at all obliged to explain why they refuse someone, that person often never gets to know what the refusal was based upon." Which leads to very weird situations: "The anti-discrimination law of 2003 made some people, who were refused by insurance companies, go to the mediator of the insurance business. As that person asked for clarification from the individual insurance companies, they strangely enough referred to the law on patient rights. 'That is confidential information', was their answer, even if the patient had given his or her permission. And that is why nobody really knows why the insurance company refuses, except for the insurance company itself." In 2004 the mediator received 5 percent more complaints from people who were refused an insurance contract. The year report mentions that "even the mediator received only partial and very unclear information when asking for it, which did not allow her to answer the consumer's questions."

Nys speaks in favour of an effective, enforceable legal protection of the patient. "The number of genetic tests is growing. If you want people to use the tests – which can also be very important to their children – you have to be able to ensure them that their data will not end up in the hands of insurance companies or potential employers."

 Info: www.demaakbaremens.org. The organization travels through the country these days performing Pandemonia, a theatre performance about genetic testing. The brochure "Genetic testing: a curse or a blessing? A critical dialogue with young people" costs 5 euro.

Ethan Hawke and Uma Thurman in Gattaca. In this SF-movie the society is divided into an upper layer of genetically manipulated, perfect beings and an underclass of genetically inferior, 'naturally conceived' people. In some sense this could soon not be science fiction anymore.

Translation: Magali

Source: De Morgen