The U.S. Equal Employment Opportunity Commission
February 25, 2009
On May 21, 2008, the President signed the Genetic Information Nondiscrimination Act of 2008 (GINA). GINA includes two titles. Title I, which amends portions of the Employee Retirement Income Security Act (ERISA), the Public Health Service Act, and the Internal Revenue Code, addresses the use of genetic information in health insurance. Title II prohibits the use of genetic information in employment, prohibits the intentional acquisition of genetic information about applicants and employees, and imposes strict confidentiality requirements.
GINA requires the Equal Employment Opportunity Commission (EEOC) to issue regulations implementing Title II of the Act by May 21, 2009 (one year after the law’s enactment). EEOC will publish a Notice of Proposed Rulemaking (NPRM) on or about February 26, 2009, under that authority and is currently accepting comments about its proposal. This Q&A document summarizes the requirements of Title II of GINA, as interpreted by the Commission in the proposed regulations.
Who must comply with Title II of GINA?
Title II applies to private and state and local government employers with 15 or more employees, employment agencies, labor unions, and joint labor-management training programs. It also covers Congress and federal executive branch agencies. The NPRM and this document use the term “covered entity” to refer collectively to all entities subject to Title II of GINA.
Are entities subject to Title II of GINA required to comply with the law now?
No. There will be some time between issuance of final regulations and the date on which the law becomes effective and entities need to begin complying with it. Title II of GINA is effective on November 21, 2009.
Why is GINA needed?
GINA was enacted, in large part, in recognition of developments in the field of genetics, the decoding of the human genome, and advances in the field of genomic medicine. Genetic tests now exist that can inform individuals whether they may be at risk for developing a specific disease or disorder. But just as the number of genetic tests increase, so do the concerns of the general public about whether they may be at risk of losing access to health coverage or employment if insurers or employers have their genetic information.
Congress enacted GINA to address these concerns, by prohibiting discrimination based on genetic information and restricting acquisition and disclosure of such information, so that the general public would not fear adverse employment- or health coverage-related consequences for having a genetic test or participating in research studies that examine genetic information.
What is “genetic information?”
The statute and the NPRM include a detailed description of what constitutes “genetic information.” Genetic information includes, for example, information about an individual’s genetic tests, genetic tests of a family member, and family medical history. Genetic information does not include information about the sex or age of an individual or the individual’s family members, or information that an individual currently has a disease or disorder. Genetic information also does not include tests for alcohol or drug use. The Commission specifically invites public comment on other kinds of tests that covered entities may conduct and whether they should be considered genetic tests.
What practices are prohibited by GINA Title II?
Title II of GINA prohibits use of genetic information in making decisions related to any terms, conditions, or privileges of employment, prohibits covered entities from intentionally acquiring genetic information, requires confidentiality with respect to genetic information (with limited exceptions), and prohibits retaliation.
Full Q & A: http://www.eeoc.gov/policy/docs/qanda_geneticinfo.html
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