In the most complete survey yet of possible discrimination, around 1 in 12 people who have taken a genetic test said they had been disadvantaged as a result- for example, by being denied appropriate life insurance.
The survey is part of the pioneering Genetic Discrimination Project, which is attempting to document the extent of genetic discrimination in Australia and help any victims seek redress. A team led by Kristine Barlow-Stewart, who heads the Centre for Genetics Education in Sydney, analysed questionnaires filled in by more than 1000 people who had taken predictive tests for serious diseases, such as neurodegenerative disorders and cancer.
Initial results show that more respondents felt they had benefited from the test than claimed to have lost out, Barlow-Stewart told a meeting of the American Society of Human Genetics in Salt Lake City, Utah, last week. But disturbingly, 87 people - 7.3 per cent of the sample - said they had suffered specific instances of negative treatment. Similar findings have emerged from previous surveys, but employers and insurers have felt able to dismiss such complaints as spurious because the past studies were anonymous and few cases ended up in court or before a tribunal.
The Genetic Discrimination Project differs from the earlier surveys in that respondents were asked if they were willing to be interviewed, and this allows researchers to investigate alleged instances of discrimination. The team also persuaded the Australian insurance industry to open up its books, and has scoured court and tribunal records. "The qualitative aspects of their follow-up are unique," says Paul Billings of the University of California, Berkeley, who chairs the Council for Responsible Genetics.
None of the people who said they had been mistreated pursued a formal complaint. "People don't know where to complain, and how to complain," Barlow-Stewart says. "Even though there are systems in place, they aren't using them." The questionnaires revealed that people were deterred by the fear of further negative consequences, emotional trauma or bureaucratic barriers.
Barlow-Stewart and her colleagues are now conducting follow-up interviews. They have already uncovered a case that they are pursuing with the Investment and Financial Services Association, which regulates the Australian insurance industry. The woman in question tested positive for a variant of the gene BRCA1 that puts her at high risk of developing breast and ovarian tumours. But her life insurance company went far further and denied her cover for all forms of cancer.
In the UK there is a moratorium on the use of genetic test results by insurers until 2011. In many countries, including Australia, insurance companies are allowed to ask their customers whether they have taken any genetic tests, but Barlow-Stewart says they are only supposed to use this information in ways that are "statistically relevant". She believes that denying cover for all forms of cancer on the basis of a BRCA1 test is a clear breach of this policy.
Some experts are now calling for similar studies in other countries to expose insurers and employers who are acting unethically. The BRCA1 case is "indicative of what might be a more general practice", suggests Bartha Maria Knoppers, who studies the ethics of genetic testing at the University of Montreal in Canada.
Author: Peter Aldhous
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THIS ARTICLE APPEARS IN NEW SCIENTIST MAGAZINE ISSUE: 5 NOVEMBER 2005