Genetics is about to join race, religion, sex, color and national origin among workplace protections against discrimination. The Genetics Information Nondiscrimination Act, signed into law by President Bush in 2008, prohibits employers from discriminating based on genetic testing or history of workers or job applicants, including as part of health coverage. Civil rights, ethics and business groups say the change, which will take effect Saturday, is the most significant civil rights legislation since the Americans with Disabilities Act in 1991.
Genetics is about to join race, religion, sex, color and national origin among workplace protections against discrimination.
The Genetics Information Nondiscrimination Act, signed into law by President Bush in 2008, prohibits employers from discriminating based on genetic testing or history of workers or job applicants, including as part of health coverage.
Civil rights, ethics and business groups say the change, which will take effect Saturday, is the most significant civil rights legislation since the Americans with Disabilities Act in 1991.
“It’s taking it another step back from the rights people obtained with ADA and providing that protection before the disability develops,” said Mary Lee Leahy, a Springfield attorney who concentrates in civil rights and employment law.
“You can’t fire someone because they have breast cancer. The theory (behind the law) is now you won’t be able to fire them because they have the breast cancer gene,” Leahy said.
No family history
“There were some larger insurers and larger employers who were starting to use genetic testing in some of their hiring practices and health-care plans. That is what sparked this a few years ago,” said Jay Dee Shattuck, director of the employment law council for the Illinois Chamber of Commerce.
Illinois enacted its own version of the genetic rights protections earlier this year in anticipation of the federal law, and Shattuck said the rules add another layer of potential legal liability for employers. Provisions of the federal law applying to insurers already took effect.
Not only is genetic testing prohibited, the federal law now bars employers and insurers from asking for family medical histories, including as part of insurance-enrollment questionnaires or as the basis for premium discounts.
Shattuck said companies also would have to be more careful that wellness incentives do not violate the law.
“There is potential legal liability there. Incentives are sometimes used as a carrot and sometimes are used as a stick,” said Shattuck.
University of Illinois economist Mattias Polborn warned in a paper before the measure was enacted in 2008 that the ban actually could drive up health insurance premiums by banning use of genetic testing to gauge the risk of potentially costly diseases.
“Not many insurers are doing this, and this is one of those laws that says they don’t want them to start doing it,” Polborn said of the law now.
While genetic testing is available for only a few diseases, Polborn said the science has advanced quickly and that policyholders could actually benefit if insurers knew genetic risks and could average out costs.
Patients are asking
“Theoretically, it could become a nightmare for consumers that it (test results) might get back to their insurance companies,” said Carla Daniels, an oncology nurse practitioner at Springfield Clinic. “It’s always been a fear among patients, and certainly it’s a realistic fear, though I’ve never run across anyone who has had a problem.”
Daniels, who provides genetic counseling for hereditary cancers, said genetic-testing technology is moving quickly.
“We have the ability to find genes for cancer, though we don’t know how that predisposes someone,” Daniels said.
She added that research also is progressing into genetic markers for diseases such as diabetes and hypertension and the federal law provides important safeguards.
The Burlington-Northern case
A 2002 settlement of claims by a group of Nebraska railroad workers that they were tested for genetic tendencies without their knowledge is cited as a turning point by supporters of the genetic bill of rights, such as the American Society of Human Genetics.
The employees of Burlington-Northern and Santa Fe Railroad claimed they were tested for a genetic disposition to carpal tunnel syndrome after developing the condition. The railroad admitted no wrongdoing in the legal settlement.
A statement provided by the society headquarters in Bethesda, Md., said protecting the privacy of personal genetic information actually would encourage early testing and treatment for individuals.
“The purpose of this legislation is to protect the privacy of Americans’ personal genetic information and to prevent potential genetic discrimination in employment and health insurance decisions,” the group said.
The group also said the law would encourage research into potential cures by removing the fear that the information could be misused.
Better not to know
Patty Curry says employers are accustomed to an array of federal and state restrictions on the kind of questions that can be asked in interviews and evaluations, especially when it comes to health.
“You don’t ask personal questions. You’re better off not knowing, because if you know, someone will say, ‘Why didn’t you tell us about this?’ There’s just a whole list of questions you stay away from in interviews, especially family history,” said Curry, director of human resources for ILLMO Products Co. in Jacksonville.
Curry, who is also president of the Central Illinois Chapter of the Society for Human Resource Management, said there has been some discussion of the new federal law among society members, but the immediate issue is to make sure covered employers comply with the new notification requirements.
“We just bought nine new posters, and a week after that, they told me GINA has passed,” Curry said.
While posters can be obtained free through the U.S. Department of Labor and the Illinois Department of Labor, Curry said she usually buys posters as part of regular rotations. This time, she said she plans to use the government Web sites.
“The posters are expensive, and we’re a small company,” she said.
Tim Landis can be reached at (217) 788-1536 or firstname.lastname@example.org.
The Genetics Information Nondiscrimination Act was signed into law by former President Bush on May 21, 2008. Effective date: Nov. 21, 2009 for employers; provisions for insurers took effect in May.
Companies and organizations covered
Private, and state and local government employers with 15 or more employees, employment agencies, labor unions and joint labor-management training programs. It also covers Congress and federal executive branch agencies.
What is “genetic information?”
Includes individual’s genetic tests, genetic tests of a family member, and family medical history. Does not include information about the sex or age of an individual or the individual’s family members, or information that an individual currently has a disease or disorder. Genetic information also does not include tests for alcohol or drug use.
Are there exceptions?
One exception, sometimes referred to as the “water cooler” exception, applies to inadvertent acquisition of genetic information. The may occur, for example, where a supervisor overhears a conversation between co-workers in which genetic information is discussed or receives genetic information in response to a question about the general health of an employee or employees’ family members.
Source: U.S. Department of Labor
Want more information?
Updates on federal and state anti-discrimination laws, including workplace posting requirements, are available on the Web sites of the U.S. Department of Labor, http://www.dol.gov, and the Illinois Department of Labor, http://www.state.il.us/Agency/idol.