Many Americans fear that participating in research or undergoing genetic testing will lead to them being discriminated against based on their genetics. Such fears may dissuade patients from volunteering to participate in the research necessary for the development of new tests, therapies and cures, or refusing genomics-based clinical tests. Federal legislation known as "GINA" protects Americans from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II). Title I amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act (PHSA), and the Internal Revenue Code (IRC), through the Health Insurance Portability and Accountability Act of 1996 (HIPAA), as well as the Social Security Act, to prohibit health insurers from engaging in genetic discrimination.
NOW, however, new legislation is being proposed: H.R.1313, the Preserving Employee Wellness Programs Act, seeks to exempt employer-based wellness programs from GINA and the ADA. Voice your concerns to your U.S. federal representatives. A sample letter is available for your use.