New law bans genetic discrimination

The most sweeping federal anti-discrimination law in nearly 20 years takes effect today, prohibiting employers from hiring, firing or determining promotions based on genetic makeup.

Additionally, health insurers will not be allowed to consider a person’s genetics -- such as predisposition for Parkinson’s disease -- to set insurance rates or deny coverage.

Not since the Americans With Disabilities Act of 1990 has the federal government implemented such far-reaching workplace protections. Stuart J. Ishimaru, acting chairman of the Equal Employment Opportunity Commission, said in a statement that the law reaffirms the idea that people have a right to be judged solely on merit.

“No one should be denied a job or the right to be treated fairly in the workplace based on fears that he or she may develop some condition in the future,” he said.


The National Federation of Independent Business, a nonprofit lobbying group for small businesses, filed a number of concerns in April with the EEOC, which oversees the law. The concerns included whether employers who “innocently discover” genetic information about their workers may be held liable for having that information in their files, the “confusing” interplay of other federal statutes, and the lack of an exception for publicly available genetic information on the Internet.

The business group is seeking to teach its members that under the law, any piece of medical history -- whether an employee’s own or that of a family member -- constitutes genetic information, said Elizabeth Milito, senior counsel at the federation.

Robert Zirkelbach, a spokesman for the industry group America’s Health Insurance Plans, said that his association originally supported the bill, but that the resulting regulations ultimately would disrupt efforts to stay healthy through wellness and disease-management programs.

“If a patient is at risk for a particular condition, they are a good candidate to do more preventive screenings, and this would prohibit some of that information even being gathered,” Zirkelbach said.

There is not a lot of evidence that this kind of discrimination has been taking place. As of May, no genetic-employment discrimination cases had been brought before U.S. federal or state courts, according to the National Human Genome Research Institute. The government filed suit in 2001 against the Burlington Northern Santa Fe Railway Co. under the ADA for secretly testing some workers for a genetic defect that some believe can predispose a person to carpal tunnel syndrome. The railway settled the EEOC suit for $2.2 million.

Peter Bennett, an attorney in Maine who specializes in employment law, said he knew of no pending genetic discrimination cases, but expects them to pile up soon, in what he called a “kabuki dance” of litigation to sort out who is liable for what.

The Genetic Information Nondiscrimination Act, signed by President Bush in May 2008, is a huge victory for proponents of personalized medicine, which includes using genetic tests to aid in the diagnosis of disease and the selection of medicine.

“The psychological security regarding employment and insurance was a stumbling block to the advancement of personalized medicine,” said Edward Abrahams, executive director of the Personalized Medicine Coalition.

“Moving that boulder from the train tracks was a major accomplishment.”