ANNAPOLIS – Within five to 10 years, scientists believe they will be able to predict who might be at risk for a genetically linked disease.
Data from the federal Human Genome Project has the potential to revolutionize health care by giving doctors the ability to determine if a person is predisposed to certain diseases, such as Alzheimer’s, breast cancer and diabetes, said Kathy Hudson, assistant director to the National Human Genome Research Institute in Bethesda.
However, the information could also be used to discriminate — a problem the Maryland General Assembly is working to prevent. It passed a measure prohibiting an employer from refusing to hire an individual based on genetic information. Under the proposed law, employers would be prohibited from requesting or requiring a job applicant to take a genetic test.
Gov. Parris N. Glendening is expected to sign the bill, which passed unanimously in the House and Senate, said spokeswoman Raquel Guillory.
“We all applaud the scientific breakthroughs made in genetic research but we must be sure that testing, which can predict an individual’s potential for developing a disease or syndrome, is not misused,” said sponsor Sen. Jennie Forehand, D-Montgomery.
Last year, House bill sponsor Michael Finifter, D-Baltimore County, introduced similar legislation, which passed the House but died in a Senate committee without a vote.
Montgomery County made history last year when it became the first local jurisdiction in the country to have a law protecting workers from discrimination based on genetics. The law took effect March 21.
“The level of support for it shows that it addressed a real need and makes sense to many people,” said Councilman Phil Andrews, who sponsored the bill in Montgomery County. “The time is right. It’s important to get ahead of the curve before it becomes common.”
Genetic testing is already happening, according to the American Management Association, which last year surveyed 2,133 companies and found seven performed such testing on employees.
In fact, in February, two employee unions sued Burlington Northern Santa Fe Railway, one of the nation’s largest railroads, for performing genetic tests on people to determine their risk for developing carpal tunnel syndrome. The railroad has discontinued the practice, but a lawsuit is pending in U.S. District Court in Sioux City, Iowa.
Last year, then-President Clinton issued an executive order banning federal agencies from collecting or using genetic information, including family medical history.
A bill outlawing genetic discrimination in employment and health insurance decisions is pending in the U.S. Senate.
One of the risks of genetic discrimination is that it could be a threat to clinical trials, said Barbara Fuller, senior policy adviser for the National Human Genome Research Institute. She said people might not volunteer to participate in clinical trials for fear that their information could be used against them.
“It’s something that we’re very concerned about,” said Fuller. “We know that people do not want to participate in research projects because of the fear of discrimination. We know that employers have been using genetic testing.”
With this legislation, Maryland would join 23 other states with laws protecting workers from discrimination. Maryland already has a law prohibiting genetic discrimination in insurance company decisions.
However, even if the state law is enacted, genetic discrimination is hard to prove, said Andrews. Employers may claim they fired a person for “sloppy work,” instead of for carrying the breast cancer gene. Andrews said he hopes that if there is a pattern of continued testing for no reason, people will ask questions.
“We want to see genetic research go forward because it has promise to save lives,” said Andrews. “It’s important that there are safeguards. Privacy, confidentiality and how the information is used are very important.”