Unethical Policies Undermine Value of Genetic Testing
New British law permits DNA-based discrimination 

Arthur Caplan, Ph.D. / MSNBC 18oct00

Researchers at the University of Michigan scored a major breakthrough in the war on breast cancer this week. Unfortunately, a political decision in England, also made this week, may wind up turning a breakthrough into a setback. Biology and public policy need to be brought into line — and fast — lest a medical miracle turn into a nightmare.

THE MICHIGAN scientists found a gene that’s responsible for the most deadly form of breast cancer — inflammatory breast cancer, or IBC. IBC accounts for just 6 percent of the breast cancer diagnoses in the United States each year, but this form of cancer is much deadlier than other types of breast tumors: Only 45 percent of women with IBC survive more than five years.
       The bit of DNA responsible for this virulent form of breast cancer is called the RhoC GTPase gene. All women have this gene but those with IBC have too many copies. This causes the body to overproduce a chemical that lets cancer cells grow rapidly and spread quickly.
       With this discovery it will soon be possible to test women at risk for breast cancer to see if they have too many copies of the IBC gene. This could lead to earlier and more effective treatment.
       So far so good. But not all is as it should be when it comes to the politics of breast cancer.
       In England this week, a law was passed that would permit insurance companies to use the results of genetic tests to refuse coverage or set higher premiums for those born with “faulty” genes that could produce premature death or costly medical bills.
       The Genetics and Insurance Committee, which reports to the Department of Health, has given approval, despite advice to the contrary from other panels and groups, to make Huntington’s disease the first disease for which insurers can factor in genetic risks into their rates.
        Letting insurance companies use genetic test results may not create a huge problem in England, where all citizens have access to the National Health Service. But should we decide to follow Britain’s lead and allow our private insurance companies, managed care organizations and employers to use genetic test results it would create havoc.
       First, many people who might consider using genetic testing to see if they are at risk of diseases like inflammatory breast cancer might have second thoughts — fears of privacy issues scaring them from tests that could save their lives.
       And second, such regulations could wind up leaving not only those who are tested at risk of losing their job or insurance, but also anyone who is a direct genetic relative, such as a sister or daughter.
       There are those who will argue that if people are at risk of getting expensive or fatal diseases, then it is only fair to let insurance companies know about such risks. Otherwise what is to prevent them from loading up on health or life or disability insurance?But the answer to how to use new genetic knowledge is not to add still more people to the ranks of those who have no health insurance or cannot change jobs for fear that they will never get insured again. If the fruits of the genetic revolution are to become available to all, we are going to have to start to reverse the long history of making insurance available according to the risks of the biological lottery and start making minimal insurance available to all.
       The British have shown us exactly what not to do. The researchers who have found yet another piece in the complex puzzle of breast cancer make it imperative that we quickly reach a consensus on what is the right thing to do when biology and public policy collide.
       
       Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania in Philadelphia.