Genetic Information Nondiscrimination Act of 2008
Many people wonder if undergoing genetic tests will lead to being discriminated against based on their genetics. This page provides an overview of the Genetic Information Nondiscrimination Act (GINA).
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. Title II of GINA is implemented by the Equal Employment Opportunity Commission (EEOC) and prevents employers from using genetic information in employment decisions and prevents employers from requesting and requiring genetic information from employees or those applying for jobs.
Health Insurance (Title I)
GINA prohibits health insurers from discrimination based on the genetic information of enrollees. Specifically, health insurers may not use genetic information to determine if someone is eligible for insurance or to make 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 health insurance protections of GINA extend to private health insurers, Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans Health Administration. For the U.S. Military’s TRICARE insurance program, GINA offers more limited protection. TRICARE may not use genetic information for coverage, underwriting, or premium-setting, but eligibility for TRICARE insurance is contingent upon employment by the U.S. Military, and GINA’s employment protections do not apply to the U.S. Military. The U.S. military is permitted to use genetic and medical information to make employment decisions (see next section on “Employment (Title II)” for more information).
GINA’s health insurance protections do not cover long-term care insurance, life insurance, or disability insurance, though some states have state laws that offer additional protections against genetic discrimination in these lines of insurance. Visit the Genome Statute and Legislation Database to search for relevant state laws.The regulations governing the implementation of GINA in health insurance took 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 rule that went into effect March 26, 2013.
Employment (Title II)
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 the implementation of GINA in employment took effect on January 10, 2011.
An important exception to Title II of GINA involves the U.S. Military. The military is permitted to use genetic information to make employment decisions. Note that eligibility for TRICARE insurance is contingent upon employment by the military, and so genetic test results may affect one’s ability to access TRICARE insurance.
Also, importantly, GINA does not apply to employers with fewer than 15 employees. View the full text of The Genetic Information Nondiscrimination Act of 2008, Public Law 110-223.
Other Laws
The Health Insurance Portability and Accountability Act
One part of Title I of GINA required HHS to amend the Health Insurance Portability and Accountability Act (HIPAA), which lays out privacy requirements for health information. The modification to HIPAA, made in 2013, states that genetic information is considered to be health information; therefore, it cannot be used by health insurers to make any decisions about health insurance benefits, eligibility for benefits, or the calculation of premiums under a health plan.
The Affordable Care Act
A major provision of The Affordable Care Act of 2010 (ACA) is to establish ‘guaranteed issue’; issuers offering insurance in either the group or individual market must provide coverage for all individuals who request it. The law therefore prohibits issuers of health insurance from discriminating against patients with genetic diseases by refusing coverage because of ‘pre-existing conditions’. ACA further provides additional protections for patients with genetic diseases by establishing that certain health insurers may only vary premiums based on a few specified factors such as age or geographic area, thereby prohibiting the adjustment of premiums because of medical conditions.
The Americans with Disabilities Act
The Americans with Disabilities Act (ADA) prohibits discrimination in employment, public services, accommodations, and communications based on a disability. In 1995, EEOC issued an interpretation that discrimination based on genetic information relating to illness, disease, or other disorders is prohibited by the ADA. In a subsequent Senate hearing in 2000, EEOC Commissioner Paul Miller further affirmed that the ADA “can be interpreted to prohibit employment discrimination based on genetic information.” However, these EEOC opinions are not legally binding, and whether the ADA protects against genetic discrimination in the workplace has never been tested in court.
On May 17, 2016, in conjunction with releasing amended regulations on GINA and wellness programs (see “Employee Wellness Programs”), EEOC amended ADA regulations to permit employers to offer inducements to employees who volunteer disability-related health information for the purposes of wellness programs. The amended ADA regulations also say that wellness programs may request medical examinations of participating employees. EEOC further stated that collecting disability-related information and requesting medical examinations for wellness programs would only be permissible provided that employers comply with existing nondiscrimination and nondisclosure protections dictated by ERISA and HIPAA. The permissibility of offering inducements in exchange for employees’ health information is contingent upon the voluntary nature of wellness programs.
The ADA has been used to challenge genetic testing practices by an employer. In 2001, EEOC filed a suit against the Burlington Northern Santa Fe (BNSF) Railroad for secretly testing its employees for a rare genetic condition (hereditary neuropathy with liability to pressure palsies – HNPP) that causes carpal tunnel syndrome as one of its many symptoms. BNSF claimed that the testing was a way of determining whether the high incidence of repetitive-stress injuries among its employees was work-related. Besides testing for HNPP, company-paid doctors also were instructed to screen for several other medical conditions such as diabetes and alcoholism. EEOC and BNSF announced a mediated settlement in 2002.
State Laws
A patchwork of state laws exists to protect Americans from genetic discrimination, although these laws vary widely in the scope, applicability, and amount of protection provided. GINA sets a floor of minimum protection against genetic discrimination and does not preempt state laws with stricter protections.
The earliest state laws focused on particular genetic conditions. For example, North Carolina was the first state to prohibit discrimination based on the presence of the sickle cell trait. In 1991, Wisconsin was the first state to prevent whole-sale discrimination based on genetic tests.
Some states have passed laws that go beyond the scope of GINA to prohibit genetic discrimination for “other insurances”, including life insurance, disability insurance, and long-term care insurance. In 2011, California passed the “California Genetic Information Nondiscrimination Act” (CalGINA), which extended protections even further to prohibit genetic discrimination in emergency medical services, housing, mortgage lending, education, and other state-funded programs. You may visit the Genome Statute and Legislation Database to search for relevant state laws.
Sources:
- Courtesy of NIH National Human Genome Research Institute: Genetic Discrimination, https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination#gina, accessed on August 14th, 2020.
Additional Readings:
- National Human Genome Research Institute, NIH: Regulation of Genetic Tests, https://www.genome.gov/about-genomics/policy-issues/Regulation-of-Genetic-Tests.
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