Published on Wednesday, June 28, 2000 in the Boston Globe
Activists Renew Calls For Stalled Genetic Privacy Laws
by Richard Saltus
Activists, legislators, and biotech organizations yesterday urged rapid action to protect the genetic privacy of individuals and to ban discrimination based on genes, noting that such legislation has stalled in Massachusetts and in Washington.
Massachusetts is one of 20 states that have not passed a genetic privacy bill. The renewed calls for legislation follow the announcement Monday that the human genetic blueprint has been nearly completed, clearing the way for medical tests that could one day predict future health and illness.
''This science holds tremendous promise, but many Americans will refuse to take genetic tests unless they are assured their information will remain private,'' said Representative Louise Slaughter, a New York Democrat who has for two years tried to get a privacy safeguard bill through Congress.
''We want to make sure health insurance companies and employers won't drop people because they might, or might not, get sick at some point in the future,'' said Slaughter, whose current genetic privacy bill, cosponsored by Senator Edward M. Kennedy and three other senators, remains stalled in a Republican-controlled committee.
''He doesn't even answer our letters,'' Slaughter said in an interview yesterday, referring to the House Commerce Committee Chairman, Virginia Representative Thomas J. Bliley Jr. ''He says he's never heard of anyone being discriminated against'' on genetic grounds, she added.
In Massachusetts, ''we were on the cutting edge of this issue when I started working on it four years ago,'' said state Representative Jay R. Kaufman, a Democrat from Lexington who sponsored two current bills, one involving privacy of genetic information and the other banning discrimination on the basis of genetic makeup.
Meanwhile, ''30 other states have passed us by and already have'' genetic privacy laws, Kaufman said yesterday. ''I find it hard to understand and very disappointing,'' he added, but noted that some of the other states' laws are not as comprehensive as the ones being sought here.
Several bills are pending in the House Committee on Science and Technology and the Ways and Means Committee, dealing both with privacy of genetic information and discrimination. The committee chairman, Representative Arthur Broadhurst, said it might be possible to pass a scaled-down bill dealing only with discrimination in health and disability insurance and employment.
But there are concerns about moving too hastily on genetic privacy legislation because ''we want to make sure we don't hinder further research'' by medical scientists who want access to banks of genetic and health data, he said.
On Monday, Dr. Francis Collins, the leader of the international team that has mapped most of the DNA information that governs how the body is built and operates, said, ''Health insurance companies should never be able to discriminate against someone based on their genetic profile ... we should vigorously strive to protect genetic confidentiality.''
To be sure, well-documented cases of genetic discrimination haven't yet emerged in large numbers. Still, the potential for such discrimination, as genetic science begins to uncover more and more DNA sequences predictive of disease, is well-recognized.
Advocates say that already, people are refusing genetic testing or even health care for genetic conditions because they're afraid the information will go in their medical records and be used against them.
The plight of Terri Seargent, a Wilmington, N.C., woman who says she was discriminated against, may be a precursor of cases to come.
Until she was diagnosed with a genetic disease needing treatment with an expensive drug, Seargent was getting excellent reviews in her job.
But when her self-insured employer glimpsed her medical bills of nearly $4,000 a month, that changed.
''I was called into the office and told my services were no longer needed,'' said Seargent.
The 46-year-old clerical worker, who battles the lung disease that killed her brother, has filed a complaint with the Equal Employment Opportunity Commission under the Americans with Disabilities Act.
The tension between furthering genetic research and protecting privacy is reflected in the position of the Biotechnology Industry Organization, which says, '' We urge Congress to pass comprehensive confidentiality legislation that protects patients, while facilitating the positive uses of medical information for treating patients and continuing the breakthrough scientific achievements that are taking medicine'' into a new era.
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