Genetic Non-Discrimination is Now Law

Congress passed the Genetic Information Nondiscrimination Act (GINA) in 2008, making it illegal for employers to request, require, or purchase genetic information, and prohibiting discrimination in health insurance coverage.

The Equal Employment Opportunity Commission, (EEOC), adopted rules for the employment portion in November 2010, and they became effective in January 2011.

Genetic research has advanced quickly over the past 20 years. Scientists mapped out the human genome, which equals all the genes that make up humans, in 2003.

These advances, which prompted the law, make it possible for people to learn their potential to develop certain medical conditions based on their family histories.

Treatment for some conditions can be costly, so concerns cropped up about the potential misuse of genetic information by insurance companies and employers, many of which pay for their employees’ health insurance, according to Miranda Grier, who teaches employment law at the University of Oregon School of Law.

For example, she said, to keep costs down, an employer might decide not to hire employees if they or their family members have the potential for certain medical conditions.
“Employment should be related to a person’s performance on the job,” Grier said.

While genetic employment discrimination has not generated a large number of lawsuits, Grier said, it is a concern, especially as the public becomes more aware of genetic research.

The law covers businesses with 15 or more employees, along with labor unions, employment agencies and apprenticeship and training programs, and it protects individuals or family members, including fetuses or embryos of those receiving fertility treatments.

GINA defines genetic tests as those that reveal, for example, a predisposition to breast cancer, colon cancer, VHL, or screening for cystic fibrosis or sickle-cell anemia.

Employers are permitted to test workers to determine if they have alcohol or illegal drugs in their systems. But they cannot test for employees’ genetic predisposition to alcoholism or drug abuse.

Several exceptions are allowed employers for obtaining genetic information. They include:

• Overhearing the information inadvertently, or in a casual conversation, although probing follow-up questioning would be prohibited.< /p>

• Employees’ participation in voluntary wellness programs, provided employers cannot access the information.
• Obtaining medical conditions to verify the need for leave under the Family and Medical Leave Act.
• Learning the information from publicly available sources, such as television, the Internet or publications.

Similarly, there are exceptions to the law for disclosing genetic information. They include:

• When it is requested in writing by the employee.
• When giving it to a health researcher.
• If it’s in response to a court order.
• When it is requested by government officials investigating compliance with GINA.

While this is a new step for most states, employers in Oregon will see little change according to Grier. “I think that it fits right in with the system employers use in [following] the Americans with Disabilities Act and the Family and Medical Leave Act,” she said.

Based on an article by Tim Doran in The Bulletin, Bend, Oregon, January 2011 http://www.bendbulletin.com.

As printed in the VHL Family Forum 19:2, April/May 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.