Britain Moves to Ban Insurance Gene Tests
Date accessed: 08 May 2001
By T. R. Reid
Washington Post Staff Writer
Monday, April 30, 2001; Page A11
LONDON -- Britain's government has tentatively endorsed a ban on genetic testing by insurance companies, hoping to prevent the emergence of a "genetic underclass" of people unable to buy health or life insurance.
The new policy would mean huge savings, in money and peace of mind, for people such as Caroline Lisher, 41, an executive in the London suburbs. After tests showed she had a gene associated with breast cancer, she was unable to buy life insurance. That, in turn, led to heavy additional expense when Lisher bought a home in 1995.
She wanted to take out a so-called endowment mortgage, a common formulation here in which the mortgage is backed by life insurance. But since the genetic evidence made her ineligible for insurance, she had to accept a more expensive loan.
"It has cost me so far 5,000 pounds [about $7,200] in additional payments," Lisher said. "I think someone should stop the insurers using the [genetic] information."
And that is what Alan Milburn, health secretary in Prime Minister Tony Blair's cabinet, seems likely to do.
Laying out the government's first comprehensive policy on the genetics revolution, Milburn said earlier this month that he would support a moratorium on the use of gene tests by insurance companies if a commission recommends it. The government's Human Genetics Commission is due to issue a report in May and industry observers are predicting it will call for such a ban.
The dispute over genetic testing by insurance companies is a classic case of a technological breakthrough that challenges traditional ways of doing business. Insurance companies make their money by using historical data that predict how many people will contract certain diseases and die prematurely. But genetic testing can sometimes predict a particular individual's susceptibility to a particular disease. Armed with that information, insurance companies might turn down individuals who have a genetic predisposition for a certain disease.
For the most part, insurers want to use any information available to help them avoid high-risk customers. "If it is relevant information, it seems to us in principle that it is very difficult to ignore that," said Mary Francis, director general of the Association of British Insurers.
But a House of Commons committee has warned that the use of genetic tests would doom certain individuals to a "genetic underclass" with no insurance coverage. The committee said this risk might prompt people to avoid valuable medical tests for fear of losing their life insurance.
Milburn, laying out the government policy in a speech April 19, said he would support a moratorium on testing, if recommended by the commission, to make sure that "citizens can choose to take genetic tests free from the fear that should they test positive they will face an enormous bill for insurance or treatment."
The government's National Health Service offers free care to everyone in Britain, but some people also buy health insurance to pay for private doctors.
Several European countries -- including Austria, Belgium, Denmark, France, Norway and the Netherlands -- have either banned genetic tests or placed a moratorium on their use. In the United States, about 20 states have banned or limited genetic testing by insurance companies. Proposed legislation to make the prohibition national is stalemated in Congress.
Some European countries forbid insurance companies from requiring genetic tests as a condition of insurance, but permit the companies to use the results of tests a patient has had earlier. Others ban any use of genetic information in insurance decisions.
Lisher, the British woman turned down for life insurance, takes a middle-of-the-road position. An insurance underwriter herself, she says she can "see both sides of the coin."
Lisher said she understands that an insurer might not want to take on the risk that she will die of breast cancer. "I wouldn't mind [a limited] exclusion," she said, "if my policy didn't cover breast cancer. [But] if I had a car accident or heart attack or whatever, I should be covered for it."
Category: 4. Ethical and Social Concerns Arising out of Biotechnology, 32. Genome Project and Genomics