The Genetic Information Nondiscrimination Act (GINA) of 2008 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.
GINA prohibits health insurers from discrimination based on the genetic information of enrollees. Specifically, health insurers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions. Furthermore, health insurers may not request or require individuals or their family members to undergo genetic testing or to provide genetic information. As defined in the law, genetic information includes family medical history, manifest disease in family members, and information regarding individuals' and family members' genetic tests.
The regulations governing implementation of GINA in health insurancetook effect on December 7, 2009 and are implemented by the Internal Revenue Service, Department of Labor, and Department of Health and Human Services (HHS). GINA amends HIPAA to clarify that genetic information is health information and provides a finalized rulethat went into effect March 26, 2013.
Title II of GINA is implemented by the Equal Employment Opportunity Commission (EEOC) and prevents employers from using genetic information in employment decisions such as hiring, firing, promotions, pay, and job assignments. Furthermore, GINA prohibits employers or other covered entities (employment agencies, labor organizations, joint labor-management training programs, and apprenticeship programs) from requiring or requesting genetic information and/or genetic tests as a condition of employment. The regulations governing implementation of GINA in employment took effect on January 10, 2011.
For text of the law, please see: The Genetic Information Nondiscrimination Act of 2008, Public Law 110-223
GINA has implications for individuals participating in research studies. The Office for Human Research Protections (OHRP) within HHS has issued guidance on integrating GINA into clinical research, including information on GINA's research exemption, considerations for Institutional Review Boards, and integrating information on GINA into informed consent forms.
To comply with GINA, informed consent forms should include information on any risks associated with participation in the research project and a statement describing how the confidentiality of records will be maintained. NHGRI has developed an informed consent resource for participants in genomics research.
GINA does not apply to employers with fewer than 15 employees and also does not apply for individuals covered by several forms of Federal and military insurance. Lastly, the law does not cover long-term care insurance, life insurance, or disability insurance. Beyond GINA, additional laws and policies do offer other protections against genetic discrimination (see "Genetic Discrimination and Other Laws" page).
GINA does not apply to individuals who receive their insurance through the Federal Employees Health Benefits, the Veterans Health Administration, the U.S. Military (TRICARE), and the Indian Health Service because Title I of GINA amends laws that do not have jurisdiction over these groups. However, some of these programs have internal policies that prohibit or restrict genetic discrimination.
The Office of Personnel Management, which administers the FEHB program, requires all participating insurers and plans to accept all enrollees regardless of health status.
For many years, the Department of Defense could deny benefits to a soldier or veteran who developed an illness of a known genetic basis after enlistment. In 1990, the Veterans Health Administration changed its policy and began covering genetic or hereditary conditions that manifest after enrollment, because they could be "service aggravated". In 2008, the US Military followed suit and adopted the same policy for service members under TRICARE coverage.
An individual who believes they have been discriminated against at work can file a charge with EEOC.
For information on filing a charge, please refer to: http://eeoc.gov/employees/charge.cfm
For a description of how EEOC handles each charge, please refer to: http://eeoc.gov/employees/process.cfm
Posted: April 17, 2017