White House to Seek Genetic Test Safeguards

In an effort to bring order to the frontier of science, the White House will ask Congress today to protect Americans from workplace discrimination based on information gleaned from genetic testing.

The initiative, to be unveiled by Vice President Al Gore, will be accompanied by a Clinton administration study suggesting that the potential for misuse of genetic information will rise significantly in coming years.

“While genetic technology increases the ability to detect and prevent health disorders, it can also be misused to discriminate against or stigmatize individuals,” states a draft version of the report, Genetic Information and the Work Force.

Administration officials said their goal in seeking congressional action is to increase public acceptance of the benefits of genetic testing by taking steps to assure Americans it will not be used against them.

“If you do not increase the public’s confidence that privacy will be protected and misuse of genetic information will be prohibited, it will undermine the public support for research in this area that has extraordinary potential for diagnoses and treatment,” said Chris Jennings, President Clinton’s senior health-care advisor.

Evidence of widespread apprehension is already mounting. Many women, for example, have refused to take advantage of genetic screening to determine the likelihood of breast cancer because they fear the information might be made available to employers or insurers, according to the report.

The administration report was compiled by a multi-agency task force, with the assistance of the Bethesda-based National Center for Genome Research Institute, home of the Human Genome Project and a branch of the National Institutes of Health.

The effort to craft public policy to keep pace with the rapid advances in genetic research is part of a broader effort by the Clinton White House to press Congress to ensure the quality and availability of health care.

Clinton already has endorsed legislation to prevent insurers from disclosing the results of genetic testing or increasing the cost of group insurance based on genetic information.

In 1996, Congress passed legislation prohibiting group health plans from using information obtained from genetic tests or other sources as a basis for denying or limiting coverage for individuals or charging them more.

The new legislation, which the White House will request today, extends those protections into the workplace by prohibiting employers from using genetic testing data as a basis for discriminating against workers.

Specifically, the legislation prohibits:

* Employers or potential employers from requiring or requesting that employees take a genetic test or provide genetic information as a condition of employment or benefits.

* Employers from using genetic information to discriminate against, limit, segregate or classify employees in a manner that deprives them of employment opportunities.

* Employers from obtaining or disclosing genetic information about their employees under most circumstances.

Exceptions would be allowed only to ensure workplace safety and health. Even then, affected employees would have to give their consent, and the results of genetic tests would have to be placed in confidential medical files kept separate from personnel files, according to a draft summary of the legislation provided to The Times by the White House.

Administration officials are convinced that unless such assurances are set down in law, many Americans will be reluctant to take advantage of the advances in genetic testing.

In the draft report, the administration cites evidence that the public fears the consequences of misuse of genetic testing.

The National Center for Genome Resources, a nonprofit organization based in Santa Fe, N.M., that analyzes and organizes genetic information, conducted a telephone survey last year of more than 1,000 people. Of those surveyed, 65% said they would not take genetic tests for diseases if health insurers or employers would have access to the results, and 85% said employers should be barred from obtaining information about an individual’s genetic conditions, risks and predispositions.

Researchers conducting a multiyear study in Pennsylvania reported that nearly one-third of women who had genetic mutations placing them at high risk of contracting breast cancer refused to participate, citing fears of discrimination and loss of privacy.

“There is a concern among those people interested in participating in genetic research and genetic clinical services about who will have access to that information and how it will be used,” said Kathy Hudson, assistant director for policy at the National Human Genome Research Institute. “There is more social responsibility in the scientific community and certainly in the genetic scientific community than there was at some times in the past.”

Although only a handful of existing genetic tests can indicate a healthy individual’s future risk of disease, the number is expected to grow rapidly, Hudson said.

Using the tools developed in the Human Genome Project, researchers now report a new gene discovery nearly every week. For instance, scientists recently identified a genetic alteration that appears to double a person’s risk of contracting colon cancer. The genetic alteration can be identified with a $200 blood test; regular colon examinations can then detect any emerging cancer at its earliest stages when it can be treated most easily.

Hudson quoted Thomas Jefferson as offering the best argument for legislative action: “Our laws and institutions must keep pace with the progress of the human mind.”