Friday, August 8, 2008

Genetic Information Nondiscrimination Act

The passage of the Genetic Information Nondiscrimination Act (GINA) in May of 2008, signals a new era in the field of genetic counseling and testing. It is the first and only federal law that provides broad protection of an individual’s genetic information against health insurance and employment discrimination. Men and women with a personal or family history of cancer can now confidently pursue genetic counseling and testing knowing that there are protections in place that guard against the loss of group or individual health insurance.

Before GINA, both the federal government and individual states have tried to address genetic discrimination through legislation. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 took large strides to protect genetic information, forbid exclusion, prohibit higher premiums and ban the use of genetic information as a preexisting condition. However, HIPAA and other state laws did not fully define genetic information, protect predictive information, apply to individual health plans or address employment.

GINA specifically prohibits issuers of health insurance (including group, individual and Medicare supplement policies) from using genetic information to:

• establish eligibility, contribution amounts and premium fees;

• specify the conditions of the policy;

• impose a preexisting condition exclusion.

GINA specifically prohibits employers, labor organizations, employment agencies and joint labor-management committees from using genetic information to:

• fire or refuse to hire an employee;

• discriminate against an employee with respect to compensation, promotions, or terms, conditions or privileges of employment;

• treat employees differently in admission to apprenticeships, training or retraining programs.

GINA also specifically prohibits employers and health insurers from requesting, requiring, disclosing or purchasing the results of a genetic test or genetic information. It has also been proposed that a greater number of individuals will be willing to participate in genetic research knowing that their information is protected by this new law. It is the first piece of legislation that details actions individuals can take if they do experience genetic discrimination.

While GINA is the most comprehensive law of its kind, it is important to note that it does not apply to members of the US military, veterans obtaining healthcare through Veteran’s Administration, or the Indian Health Service. It also does not address life insurance, disability insurance, or long-term-care insurance. However, it is still unclear if discrimination in these areas poses a significant threat.

The legislation was signed into law on May 21, 2008 and will take effect in 12 and 18 months for health insurance and employment protections, respectively.

For more information about GINA, please see the following resources:

Summary chart of what GINA does and does not cover prepared by the Genetic and Public Policy Center

Library of Congress entry for the GINA bill (H.R. 493)

Danielle Campfield, MS

Genetic Counselor

Yale Cancer Genetic Counseling