What is the Genetic Information Nondiscrimination Act?

The Genetic Information Nondiscrimination Act of 2008 prohibits health insurers or employers from discriminating against people based on genetic predispositions or conditions. It ensures that individuals and their family members cannot be denied health care coverage or work opportunities as a result of their genetic backgrounds. The law also protects against misuse of genetic information discovered from a variety of sources. For example, results of genetic testing to determine the health of an unborn child cannot be used to prohibit health insurance coverage to mother and baby, nor can it be used to place constraints upon the mother’s employment situation.

Basis and Scope of GINA

Gene mutations can sometimes cause serious disabilities or illness that affect life activities. People may be carriers of genetic conditions but not actually develop negative symptoms while others may actually manifest a health disorder.

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Discrimination occurs when a person’s genetic information is used to harass, intimidate or isolate individuals and prevent them from receiving appropriate healthcare benefits, attaining employment or advancing in their jobs. GINA seeks to stop this type of behavior on the part of insurance providers and employers. It protects family health history, genetic research participation, genetic test results and genetic services including genetic counseling.

Title I: Health Insurance Protections of GINA

This section of GINA defines how health insurers can use genetic information to make decisions about eligibility or coverage. Specifically, it is against the law for healthcare providers to do the following:

  • Request or require genetic information as a basis for approving, modifying or denying health insurance services.
  • Use genetic test results or family history, including preexisting conditions, to deny health insurance to individuals and their family.
  • Use genetic information from any source to determine provisions of healthcare policies or how much they will cost.

Title II: Employment Protections of GINA

GINA’s second section addresses workplace discrimination. It states that acquiring or using genetic information is illegal to make decisions about the status of employees or to restrict their job opportunities. In particular, Title II states employers may not discriminate against employees in the following ways:

  • Base hiring, promotion or termination decisions on genetic information.
  • Use genetic information to segregate, mistreat or restrict personnel.
  • Use family health history or genetic test results to determine pay, job benefits or terms of employment.
  • Actively seek out personal or family genetic information about current and potential employees or ask them to provide it.
  • Divulge any legally obtained genetic information, which must be confidentially kept in separate medical files on site.

Exceptions to GINA

There are a few instances where the Genetic Information Nondiscrimination Act does not apply. The law only covers businesses with 15 or more employees and does not extend to those in the U.S. Military or those receiving health coverage from the Veterans Health Administration benefits or the Indian Health Service. Additionally, GINA protections do not address life insurance, long-term care services, disability insurance, or other health-related policies.

Access to genetic information is more commonplace these days and can be used in ways people may not have imagined. Therefore, it is important for individuals to understand their employment and health insurance rights concerning their genetic backgrounds. In this way, the Genetic Information Nondiscrimination Act can be a helpful tool to counteract genetic discrimination.