Genetic privacy is goal of bills

Bergen Record ^ | June 22, 2003 | BOB GROVES

[sarcasm]

While bills to protect the privacy of each person's genetic information crawl through Congress, millions of Americans with hereditary illnesses remain vulnerable to discrimination by health insurance companies or employers.

Although 43 states, including New Jersey, have genetic non-discrimination laws governing health insurers, employers, or both, they vary in strength and do not apply to the majority of people covered by group health insurance plans.

Existing federal laws bar discrimination against people with disabilities and protect the privacy of medical records. But experts warn that neither law specifically covers the use of genetic information, including a person's predisposition to disease.

Proposed genetic privacy laws in both houses of Congress would ban genetic discrimination by employers and health insurers, and would standardize this protection across the country.

"Those state genetic privacy laws are well intentioned, but very limited in their effect," said Rep. Robert E. Andrews, D-Haddon Heights. Andrews estimates that "fewer than a third" of New Jersey residents are covered by the state's 1996 Genetic Privacy Act, because mostpeople are part of group health plans, which are subject to federal laws that supersede state laws.

Andrews is one of 197 co-sponsors of a genetic non-discrimination bill in the House of Representatives. The Senate is set to vote soon on a similar bill, but the House proposal appears to be stalled by opposition from the insurance industry.

A hypothetical concern just a decade or so ago, the privacy of a person's genetic makeup and family history has become a pressing matter of civil rights for patient and employee advocates. In the years since New Jersey's law took effect, scientists have decoded the human genome - the blueprint of all our genes - and DNA has become a valuable tool in law enforcement.

Without such a law, insurance companies could set premiums or deny coverage based on the chances that a person would become sick. Employers, too, could consider that information when deciding whom to hire.

"If a woman were predisposed to breast cancer, it would cost more to insure her, and an employer paying that premium might not hire her," Andrews said. "I don't think that's appropriate. I think the law needs to ban the potential health condition as a basis for discrimination and health coverage."

Such concerns led New Jersey to pass the genetic privacy law in 1996. It forbids discrimination by employers based on a person's genetic information or refusal to take a genetic test. It prohibits the use of genetic testing for underwriting in health insurance and prevents "unfair discrimination" in life and disability insurance. It also gives each person control over the release of his or her genetic information.

But the state has yet to adopt regulations that would spell out how the law should be applied.

And laws are hazy because so few genetic discrimination cases have been tried in court.

"This is a very complex issue," wrote Donna Leusner, a spokeswoman for the New Jersey Department of Health and Senior Services, via e-mail. "We have to make sure all of the issues are addressed. We have had conversations with all of the stakeholders involved, like doctors and researchers."

In the meantime, she wrote, "the law is still valid."

But it only goes so far. Group health insurance plans are governed by federal law, which does not protect against genetic discrimination, said Lawrence Gostin, professor of law and public health at Georgetown University in Washington.

Even with bipartisan support in both houses, and the blessing of President Bush, a federal law to standardize that protection nationally has been slow in coming. Andrews and other Democrats say insurers have found a powerful ally in House Majority Leader Tom DeLay, the Texas Republican. DeLay, who sets the agenda for the House, has not scheduled committee hearings or a full vote on the measure.

"The insurance industry is a major contributor and supporter of the Republican Party, and Tom DeLay wants to keep his contribution," Andrews says.

The insurance industry paid $51,499 to DeLay as part of $863,500 he received in political action committee contributions in 1997-98, according to the Center for Responsive Politics. This was second only to the $53,500 the oil and gas industry gave DeLay in PAC contributions that year, according to the Washington-based, non-partisan watchdog group.

DeLay's office did not respond to several requests for comment.

The House bill would allow patients to sue their employer or insurance company for genetic discrimination - a provision many Republicans, including President Bush, have opposed in the past. The Senate compromise, co-sponsored by Democrats Edward M. Kennedy of Massachusetts and Tom Daschle of South Dakota, dropped the lawsuit provision, and would enforce the law with fines.

"We're hopeful we can work something out" with the House, said Jim Manley, a spokesman for Kennedy.

Fear of genetic discrimination is not simply paranoia. The Burlington Northern Santa Fe railroad, for example, at one time required employees with carpal tunnel syndrome to have a genetic test, in an effort to prove the injuries were not job related.

Until recently, people were excluded from some jobs if they took certain drugs for hypertension or depression, said Rep. Bill Pascrell, D-Paterson.

"That is no longer tolerated," he said. "Why tag somebody looking for a job? We can't do that."

Nine of New Jersey's 13 congressmen, including two Republicans, have co-sponsored the House genetic non-discrimination bill. Four Republicans have not signed on: Jim Saxton of Mount Holly, Christopher Smith of Hamilton Township, E. Scott Garrett of Wantage, and Michael Ferguson of Warren Township. Saxton and Ferguson said they want to "wait and see" before endorsing the measure. Garrett and Smith did not respond to requests for comment.

The two New Jersey Republicans who endorsed the bill, Rodney Frelinghuysen and Frank A. LoBiondo, say people might be afraid to undergo lifesaving genetic tests or volunteer for clinical trials if the information could be used against them.

Frelinghuysen, of Harding Township, said he heard these fears raised by volunteers at the National Institutes of Health. He recalled one of them saying, "A lot of people are reluctant to participate in clinical trials - even as desperate as they are - because it opens their lives to all sorts of invasion of privacy."

Though the proposed federal legislation would help standardize protection, it would not offer enough employment safeguards, said Mark Rothstein, an expert in genetic non-discrimination law. The federal law would allow employers to require prospective hires to release their medical records once they were offered a job, he said.

"I support it nominally, because it's better than nothing," said Rothstein, director of the Bioethics Institute at the University of Louisville in Kentucky. "But there's a danger in enacting laws that are half a loaf, because people think they've solved the problem when they haven't."