AARC Applauds New Law Protecting Americans from Genetic Discrimination

May 30, 2008

May 21 was a red letter day for the AARC and other organizations that joined together to support legislation aimed at protecting Americans against genetic discrimination.

President Bush officially signed the Genetic Information Nondiscrimination Act (GINA) into law, barring both insurers and employers from discriminating against people based on their genetic makeup.

“The legislation is important because it protects people from genetic discrimination when getting health insurance, and it protects them from genetic discrimination by employers who might not hire them because they have a genetic condition or are a carrier of a genetic defect, such as the cystic fibrosis gene, that they might pass on to their children,” says Linda Van Scoder, EdD, RRT, long time AARC representative to the National Coalition for Health Professional Education in Genetics (NCHPE), a group working to bring health care professionals up to speed on genetics and the role it plays in clinical practice.

NCHPE was one of hundreds of organizations that teamed up along with the AARC via the Coalition for Genetic Fairness to promote the legislation. Other key respiratory-related groups in the Coalition include the Alpha-1 Foundation, the Alpha-1 Association, and the Cystic Fibrosis Foundation.

“The AARC has been a strong supporter of the legislation for at least the last year,” says Dr. Van Scoder, noting the Association signed on to Coalition letters urging Congress to pass the law. The bill ultimately received unanimous approval in the Senate and was passed by a vote of 414–1 in the House.

Another group key to the effort recently sent a letter of thanks to the AARC for its support. This letter came to the Association from the National Health Council, an organization of health care groups, including the AARC, dedicated to serving as a forum for policy development.

Specific protections under the GINA law include:

• Prohibiting group health plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
• Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
• Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and may not disclose genetic information. Similar provisions apply to employment agencies and labor organizations.