Lawmakers play catch-up to genetic science

As with most great technological advances, the imminent cracking of humanity's genetic code has raised serious social and ethical concerns - most pointedly the potential for genetic discrimination.

Within two to three years, scientists expect to finish mapping the 3.2 billion chemical letters of the human genome. Within the next decade, inexpensive tests are expected to make screenings of a person's complete genetic makeup commonplace.

In response, lawmakers nationwide are now considering sweeping laws to ensure that people are not subject to discrimination because of their genes.

Massachusetts is poised to pass what is considered to be America's strongest law against genetic discrimination, giving patients wide-ranging control of test results. Bills on the issue have been introduced in both houses of Congress this summer.

In the wake of the June announcement that scientists have finished a rough draft of the human genome, these efforts represent a new desire by lawmakers to act before science makes genetic blueprints as ubiquitous as fingerprints or DNA samples.

"Already, with but a handful of genetic tests in common use, people have lost their jobs, lost their health insurance, and lost their economic well-being due to the unfair and inappropriate use of genetic information," says Francis Collins, who directs the National Human Genome Research Institute (NHGRI) in Bethesda, Md.

Foremost among the concerns is that genetic information will create a sort of underclass, placing those who are susceptible to some genetic defect at a disadvantage.

In addition, the public is worried that profit-driven employers and insurance companies will try to exclude people with genetic flaws to hold down rising healthcare costs. More than 80 percent of Americans seek to block the access of employers and insurance companies to genetic information, according to polls.

Today, genetic discrimination remains relatively rare. Fewer than 1 percent of employers conduct genetic testing, according to a 2000 survey by the American Management Association. Still, the Council for Responsible Genetics, a bioethics advocacy group in Cambridge, Mass., has documented more than 200 cases of discrimination against people who have a genetic predisposition to certain diseases.

Most experts believe that, without new legal protections, cases of discrimination are likely to escalate in coming years as genetic testing becomes more widespread, less costly, and better understood. Under current laws, for example, employers have the right to request a broad range of job applicants' medical data, including genetic information, prior to final hiring decisions.

"We are faced with basically an open market in that there are no restrictions on [employers'] access to genetic information," says Barbara Fuller, a senior adviser to the NHGRI.

Likewise, insurance companies could face competitive pressure to use genetic test results to reduce costs, especially for people on individual plans.

Since 1991, states have taken the lead in enacting laws to prevent genetic discrimination. Today, 19 states have passed genetic privacy laws, 21 bar genetic discrimination in employment, and 32 prohibit insurers from basing underwriting or ratemaking decisions on genetic or related information.

"States have been out front," passing scores of laws and holding hundreds of hearings, says Cheye Calvo of the National Council of State Legislatures in Denver.

Only a handful of federal laws addresses - directly or indirectly - genetic discrimination, and Congress has been slow to act.

The Americans with Disabilities Act (ADA) may shield workers from discrimination based on genetic makeup - a perceived disability. But the ADA does not explicitly address the issue, and it's unclear whether courts would back such an interpretation.

Otherwise, President Clinton in February signed an order that prohibits discrimination in government agencies. And the 1996 federal Health Insurance Portability and Accountability Act prohibits the use of genetic information by group health plans and insurers to deny coverage or boost premiums. It has not been amended to cover people with individual insurance plans.

Lawmakers and experts generally agree that new federal legislation is needed to ensure adequate protection for Americans. But strong differences remain over proposed new laws.

Congressional Democrats and civil rights groups favor sweeping legislation that would set stringent privacy standards, ban discrimination by insurers and employers, and allow discrimination victims to seek uncapped damages in court. They have so far been unable to pass such a bill.

Republicans have supported more narrow legislation, focusing on discrimination by insurers only. Senate Republicans - and some Democrats - have passed such a bill, although it's not likely to become law.

In the long run, though, other factors may curb the threat of genetic discrimination, experts say. Improving therapies may help treat many genetic diseases. Moreover, experts note, the ability to discriminate is hampered by the limitations of genetic tests. "What does it mean when we have a 30 percent increased chance" of some illness, asks Raymond Gesteland, a professor of genetics at the University of Utah in Salt Lake City.

Finally, people still need to take other factors into account, Mr. Gesteland says: "We need to make sure we are not blaming everything on genes."

(c) Copyright 2000. The Christian Science Publishing Society