As the Institute’s leader from 1990 to 2004, he sparked a period of dynamism.
What role, if any, should genetic testing play in deciding who gets health and life insurance and at what price? This question was debated back and forth at a panel on "Behavior and Genes" during the Human Genome Project Conference.
Rob Bier, director of information services for the American Council of Life Insurance, tried to allay fears of genetic discrimination in issuing policies. For most people, environment plays at least as important a role in health and lifespan as genes, he said. "Education and income are far more predictive of one's future than is one's genotype," he said. In any case, no insurance companies are now requiring genetic tests from prospective customers before issuing policies, partly because they are too expensive, and none plan to do so in the near future, he added.
The insurance industry's practice of risk classification is "a practice that has been under almost continual attack," Mr. Bier said. It would be unfair for a customer who knows he is at risk for a health- or life-threatening genetic illness to conceal that information from his insurer, he added. "Both sides have to play their cards up on the table."
Wendy McGoodwin, executive director of the Council for Responsible Genetics, responded that any use of genetic information in decisions on insurance, mortgages, employment and other areas is wrong. "We think it's completely inappropriate in all situations," she said. Ironically, she added, the Americans with Disabilities Act is now in place to prohibit discrimination against people who are already disabled, but there is no legal protection for people who are merely at risk for developing a disabling condition in the future.
The notion of companies testing their employees or customers for genetic defects is troubling because "you frame the problem as a problem of individuals," Ms. McGoodwin said. For example, if it were possible to test employees in a dusty work environment for susceptibility to a lung disease and consequently deny employment to those at risk, "you divert attention and resources away from efforts that could and should go toward eliminating the workplace hazards altogether."
Another problem with genetic testing is the loss of privacy, Ms. McGoodwin said. Those why apply for health insurance must open their medical records-which may include results of past genetic testing-to the insurance company; the fear of losing insurance as a result of a negative result could discourage people from getting tested at all, she said. Furthermore, even if a person is shown to be at risk for a genetic disease, the severity of that disease often can't be predicted; a person with cystic fibrosis may live for a few months or for 30 years, she added.
Finally, Ms. McGoodwin said, genetic testing may be new, but the diseases they test for are not; insurers have always factored them into their actuarial tables. "I'm not convinced that insurance companies need access to this information to make sure the policies they issue are fiscally sound," she said.
Mr. Bier argued that discrimination was "a poor choice of a word to use in these discussions. We all make distinctions every day." Competition between insurance companies will prevent those with a genetic risk factor from being denied insurance, since any widespread and comprehensive testing in the future will reveal that everyone has at least some "bad genes," he added.
Furthermore, some test results can help rather than hurt a person's effort to obtain insurance, Mr. Bier said. In an example cited by Ms. McGoodwin, a woman whose father has Huntington's disease may be reluctant to get tested out of fear that she will be denied insurance if results show that she also will get the disease. But that person is already uninsurable because of her family history, Mr. Bier said; a positive test will mean that she can get insurance.
At the heart of the debate, audience members commented, is the question of whether an insurance company's primary goal should be to make a profit or to spread the risk of its customers equitably, and whether or not health insurance is a basic right, given the often probibitive cost of medical treatment.
Whether considering the issue of testing as a matter of public policy or as an individual patient, it's important to get all the facts, said panelist Helen Donis-Keller, professor of surgery and genetics and director of the Division of Human Molecular Genetics in the surgery department at Washington University School of Medicine. Patients should ascertain the purpose of a test and what information it will reveal before proceeding, she said. Political agendas must also be recognized and considered, she added. "There are a lot of ways to get information and participate in the decision-making process."
A version of this article appeared in the November 16, 1994 issue of MIT Tech Talk (Volume 39, Number 12).