By Lisa Seachrist

Washington Editor

WASHINGTON — The House took up the complex issue of protecting the privacy of genetic information and preventing genetic discrimination while guaranteeing that medical research remains unimpeded with the first meeting of the Health Records and Genetic Privacy Task Force this week.

Task force chair Rep. Cliff Stearns (R-Fla.), who has introduced his own legislation, The Genetic Privacy and Nondiscrimination Act, entertained testimony from bioethicists, genetic researchers, biotechnology representatives, patient advocates and health insurance representatives on what sorts of protections Congress should establish for genetic information.

"Genetic information is personal, powerful, permanent and sensitive," Stearns said Tuesday. "It not only affects the individual, but also has an impact on offspring and other blood relatives. Yet genetic research must be continued. We owe a level of privacy and the hope for treatment and cures."

National Human Genome Research Institute director Francis Collins noted that the day for those cures is rapidly advancing; the Human Genome Project is uncovering disease genes at a tremendous rate. Ultimately, he maintained, that information "will allow physicians to identify people at risk for disease and allow them to intervene before they get sick."

But currently, the ability to diagnose faulty genes outpaces any adequate medical interventions for most diseases. Collins estimated that each person carries between 5 and 30 misspellings in his or her DNA. With those sorts of odds, he noted "it is only a matter of time before that type of information affects all of us."

Collins noted that already people are unwilling to participate in genetic research that could help to translate genetic information into new cures because they fear they could lose their health insurance or employment.

"We had one gentleman who was at a high risk of a genetic disease participate in a research project, but ultimately refuse to have the genetic test," Collins said. "He was an insurance agent and he knew all too well that we couldn't guarantee that the results of those tests couldn't get back to the insurance company."

While the fear of discrimination may be thwarting the development of new therapies, David Foster, director of government relations for Genzyme Inc., of Cambridge, Mass., and representative of the Biotechnology Industry Organization (BIO), noted that extending privacy to anonymized databases could also stymie research efforts.

"We believe that informed consent is necessary for patient-identifiable medical records," Foster said. "But once those identifiers are stripped off the records, the information needs to be available to researchers."

Judith Bello, executive vice president at the Pharmaceutical Research and Manufacturers of America (PhRMA), agreed that biomedical researchers must have unfettered access to anonymized medical data, including data that may be linked through keys and codes.

Stearns voiced support for this notion at a National Health Council briefing after the hearing, noting, "It seems to me that with the advances that have been made in computer encryption technology it should be possible to adequately protect privacy for research purposes."

However, Stearns wasn't convinced that genetic information didn't represent a substantively different sort of information from a cholesterol test.

"Genetic information lends a degree of predictability that a person will get a disease; it's sensitive," Stearns said. "My first inkling is that it is something different from medical information."

However, panelists at the hearing were in near unanimous agreement that medical information is merely a part in the continuum of medical information that should be afforded privacy. Bill Allen, a bioethicist at the University of Florida College of Medicine, noted that it is impractical and harmful to omit genetic tests from a medical record because the results of a genetic test could be inferred from other aspects of the record and fragmenting the record could impede care.

Foster added that not all genetic information is sensitive, as Stearns maintains. For example, male pattern baldness is a genetic trait, as is gender; not many people would be too worried about that type of genetic information being protected. However, details of a sexually transmitted disease may be information that a person would want to keep private.

Both the Biotechnology Industry Organization (BIO) and PhRMA have indicated they would like to see genetic privacy protected in the larger context of medical records protections. In addition, both organizations testified that they would like to see a bill dealing with genetic discrimination; however, neither organization has officially endorsed any bill.

Genetic privacy and nondiscrimination legislation is likely to garner more attention since President Clinton endorsed Rep. Louise Slaughter's (D-NY) efforts to prevent genetic discrimination in health insurance. While commending Slaughter's dedication to the issue, the president noted his intention to send down legislation of his own.

Stearns noted the House leadership didn't consider genetic discrimination a high priority because it wasn't a high priority for its constituents.

"There is enough concern nationwide to work on this issue," Stearns said. "And the issue has moved up on the priority list since President Clinton's Rose Garden Ceremony." *