To protect employees from discrimination based on genetic testing results, President Bush signed the Genetic Information Nondiscrimination Act (GINA) of 2007 into law on May 21. ANA has supported this law through its long journey to enactment. GINA will fill the gaps in existing healthcare privacy laws necessary to ensure protection.
Under this law, employers cannot make decisions about whether to hire, fire, or promote employees based on the results of genetic tests. In addition, health insurers are forbidden from denying coverage to potential members or charging higher premiums to members because of genetic test results. The health insurance provisions of the bill will take effect 1 year after the measure is signed into law; the employment provisions will take effect after 18 months.
The new law is expected to encourage more people to participate in genetic testing and research efforts. Congressional leaders said that the bill will help facilitate genetic testing opportunities that are likely to lead to more preventive and cost-saving treatments for various diseases, such as breast and prostate cancer, diabetes, heart disease, and Parkinson’s disease. A recent National Institutes of Health report found that 32% of women who were offered a test to determine their genetic risk of breast cancer declined out of concern about potential discrimination.
Although the final version of GINA passed both chambers of Congress with overwhelming majorities, it took 13 years of advocacy to make this law a reality. The U.S. Chamber of Commerce, which opposed GINA, was able to win some concessions before final passage, including language that would keep an employer from being liable in lawsuits over genetic discrimination involving the employer’s health plan. In addition, many forms of insurance, such as life insurance and long-term-care insurance, have been exempted from the protections provided by this law.
ANA has supported GINA since its initial introduction in the 104th Congress. This position is supported by the Code of Ethics for Nurses, which requires nurses to safeguard the patient’s right to privacy by protecting information of a confidential nature. The Code of Ethics further states that the patient’s rights, well-being, and safety should be the determining factor in arriving at any professional judgment concerning the disposition of confidential information.
By Erin McKeon