June 26, 2000 (Washington) -- As scientists present the rough draft of the human genome, there is growing pressure on Congress to pass legislation barring discrimination by employers or insurers on the basis of a person's genetic makeup.
But experts say that while these protections are needed to prevent abuse, the actual potential for discrimination based on genetic information is limited -- at least for now.
"It's going to take a few more years to develop that sort of sophistication," Arthur Caplan, PhD, a medical ethicist at the University of Pennsylvania, in Philadelphia, tells WebMD. While the genome map creates the potential for this sort of discrimination, the map itself will need to be interpreted before it can provide any ammunition for even subtle forms of discrimination, he says.
Still, the impulse to discriminate on genetic grounds is rooted in history, and for many, the genome project raises the specter of another Nazi-like regime -- one based upon scientific evidence rather than genetic myths.
"As we near completion of mapping the human genome ..., we need to remove people's fear that they could be denied health insurance and could lose their jobs based on their individual genetic make-up," says Bonnie Lipton, president of Hadassah, a Jewish women's organization that is among several groups urging Congress to act quickly.
Besides preventing denial of health insurance or employment, proponents of such legislation say, it will be needed to stop discrimination in education and social services, among other things. Unless these protections are enacted, they say, genetic discrimination could have the same sort of results as those seen under the Nazi regime, in which certain groups were denied social entitlements and civil rights based on genetic arguments.
While he doesn't share these proponents' sense of urgency, Caplan says that at the very least, legislation will be eventually needed to ensure that no genetic testing can be done without a person's consent, that the results of any such tests will remain private, and that genetic information cannot be used to deny anyone insurance or employment, he tells WebMD.
The upside is that this legislation might encourage individuals to be tested, providing them with important insights into their genetic makeup, Caplan says. "If you don't do this, people are simply not going to get tested," he tells WebMD.
But there also is a potential downside. For example, it might be beneficial to public safety to know if a pilot suffers from early Alzheimer's, a condition that could affect job performance, Caplan says. Nonetheless, "people should presume that discrimination is unacceptable," he tells WebMD. The burden of proving that such tests are necessary should lie with those who want to use them as a screening mechanism, he explains.
That is not to say that some genetic discrimination is not inevitable. While public debate is now focused on information derived from the genome map, insurance companies already ask people about their family medical histories, Caplan says.
Because it's so early in the process, any legislation enacted now probably would not address specific situations, such as when parents choose to abort an embryo because of a genetic problem, Caplan says. But the enactment of some sort of immediate legislation to protect individuals' rights appears likely.
"Social policy must keep pace with science," says Rep. Louise Slaughter, (D-N.Y.), sponsor of one of the bills now before Congress that would ban employers from refusing to hire people, or insurers from refusing to sell them coverage, based on their genetics.
While Republicans may not support that particular bill, "we're going to do something on this issue," says John Feehery, a spokesman for House Speaker Dennis Hastert, (R-Ill.).