Skip to main content
NIH

Genetic Discrimination and 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 GINA and 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 HIPPA. 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. At present, 48 states and the District of Columbia have passed laws preventing genetic discrimination in health insurance providers. Mississippi and Washington are the only two states that have not passed laws prohibiting genetic discrimination in health insurance. 35 states and the District of Columbia prevent genetic discrimination in employment.

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. At present, 17 states have additional laws restricting the use of genetic information in determining coverage for life insurance, 17 states for disability insurance, and eight states for long-term care insurance.  

Additional Resources


Posted: April 17, 2017