By Lisa Seachrist
As scientists create more tools to test for genetic diseases, the privacy of that information will be tantamount.
A consortium of members of the National Action Plan on Breast Cancer (NAPBC) and the National Human Genome Research Institute's working group on Ethical, Legal, and Social Implications urged Congress to pass legislation barring employers from discriminating against workers on the basis of genetic information.
"It is generally accepted that we are on the threshold of a revolution in genetic medicine, allowing people to learn their genetic predisposition to disease," said Francis Collins, director of the National Human Genome Research Institute at the National Institutes of Health. "The question is, 'Will it have innocent casualties?'"
"Congress has been very supportive of funding medical research, including genetics research, to find a cure and prevention for breast cancer," said Mary Jo Ellis Kahn, co-chair of the NAPBC's Working Group on Hereditary Susceptibility. "It is equally important that they support legislation to protect research participants and patients from misuse of genetic information."
The group recommended in the March 21 issue of the journal Science that employers be prohibited from using genetic information to affect the hiring of an individual or the terms of employment. Employers should be prohibited from requesting or requiring disclosure of genetic information, from accessing genetic information, and from releasing genetic information without prior written consent.
Karen Rothenberg, director of the University of Maryland's law and health program, pointed to testing for sickle cell traits in African-Americans in the 1970s, where screening for carrier status often took place without consent and resulted in job discrimination for people who had one copy of the gene for sickle cell anemia but didn't suffer from the disease.
States Have Taken The Lead
In 1975, North Carolina passed a law making it illegal to discriminate on the basis of having sickle cell traits. Several other states passed legislation to prevent this type of discrimination. In 1989, Oregon passed a law that prohibited employers from subjecting employees to genetic screening. It was the first time that a state went beyond prohibiting a specific type of genetic test, though it failed to define the term "genetic screening."
Since then, several other states have passed legislation that to varying degrees provides protection against employment discrimination and affords some privacy protections. However, such protections can be lost simply by moving from state to state.
"The current patchwork of laws cannot adequately protect us from genetic discrimination," Rothenberg said. "There is nothing that would prevent employers from testing us without our consent and using that information to discriminate against us."
Pointing out that current estimates indicate that each person carries between 5 and 30 serious misspellings in their DNA, Collins noted, "There are no perfect specimens and we can expect genetic discrimination issues to affect us all one day."
For Christine DeMark that day has already come. DeMark was a sales consultant with a small company in Milwaukee. DeMark's mother died from Huntington's disease, and DeMark decided to undergo testing for the Huntington's gene.
A co-worker overheard her talking about the test and informed DeMark's supervisor about her situation. DeMark said her supervisor was very concerned and sympathetic and asked her to tell him the test results when she got them. Suddenly, DeMark's performance reviews went from good and excellent to unsatisfactory after her employer found out that she, like her mother, carried the gene for Huntington's disease.
"The company was self-insured and had just had to cover another employee's expensive cancer treatment," DeMark said. "I am certain that my dismissal was the result of my employer discovering that I had the Huntington's gene."
The group outlined several key recommendations to address the issues of genetic discrimination in Science.
Rothenberg noted DeMark's situation would never have happened if the law stated employers were prohibited from asking employees about genetic information. Such a law, Rothenberg asserted, would take the burden off the employee to prove discrimination had taken place and would place the burden on employers to heed the law.
"In addition, any law passed must protect a person's right to sue an employer who breaks the law," Rothenberg said, noting that if enforcement of the law relied entirely on a government agency, adequate enforcement would be subject to appropriate agency funding.
Carl Feldbaum, president of the Biotechnology Industry Organization (BIO), agreed Congress needs to act to protect genetic privacy, but the consortium's recommendations don't go far enough. "This really reinforces the need for privacy protections," he said. "But it is important to offer those protections to cover all medical information, regardless of origin so as to not inappropriately stigmatize genetic information."
BIO and other organizations last year convinced Nancy Kassebaum (R-Kan.) and Edward Kennedy (D-Mass.) that their Medical Portability Act should include genetic information in the definition of medical information.
This year, Sen. Pete Domenici (R-N.M.) introduced a bill to offer protections against genetic discrimination. *