Genetic information is defined as information about an individual and his or her family members’ genetic tests, as well as information about the manifestation of a disease or disorder in an individual’s family members (i.e., family medical history).
This type of information can be critical in helping individuals know and understand health conditions that run in their family, as well as their risk for developing certain health conditions or having a child with certain conditions, all of which assist in making healthy lifestyle choices and important medical decisions. However, many Americans wonder if participating in genetics research or undergoing genetic testing will lead to being discriminated against, based on their genetic outcomes, and consequently may lead to the decision to not take genetics-based clinical tests or participate in research for new therapies and cures. However, thanks to The Genetic Information Nondiscrimination Act of 2008 (GINA), those concerns should be alleviated.
May 21st marks the 13th anniversary of GINA, an Act of Congress designed to prohibit certain types of genetic discrimination including the misuse of genetic information such as family health history, genetic test results, the use of genetic counseling, and participation in genetic research. Specifically, the Act bars the use of genetic information in health insurance and employment, prohibiting group health plans and insurers from denying coverage to a healthy individual or charging that person higher premiums based on a genetic predisposition, and barring employers from using individuals’ genetic information when making decisions on hiring, firing, job placement, or promotions. Let’s explore the protections GINA provides in more detail:
Health Insurance (Title I)
Title I of GINA prohibits health insurers from discrimination based on the genetic information of enrollees. Essentially, the act prevents health insurers from using someone’s genetic information to determine if he/she is eligible for insurance, to refuse insurance, or charge higher prices. Additionally, health insurers may not request/require individuals or their family members to undergo genetic testing or to provide genetic information. These protections extend to private health insurers, Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans Health Administration. What GINA’s health insurance protections do not cover include 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).
Employment (Title II)
Title II of GINA is implemented by the Equal Employment Opportunity Commission (EEOC) and forbids discrimination on the basis of genetic information when it comes to any aspect of employment, which includes hiring and firing, salary/pay, job assignments, promotions, layoffs, training, and fringe benefits. An employer may never use genetic information to make an employment decision, because genetic information is not relevant to an individual’s current ability to work. The act also prohibits employers or other covered entities, such as employment agencies and labor organizations, from requiring or requesting genetic information and/or genetic tests as a condition of employment. However, it is important to note that an exception to Title II of GINA involves the U.S. Military, as the military is permitted to use genetic information to make employment decisions.
Additionally, GINA makes it illegal to harass a person because of his or her genetic information; this includes offensive or derogatory remarks about an applicant or employee or their family’s genetic information, and is illegal when it is so intrusive and severe that it leads to a hostile or offensive work environment. The law also makes it illegal to fire, demote, or otherwise “retaliate” against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding, or otherwise opposing discrimination.
Who Is Protected?
GINA applies to all employers with 15 or more employees, regardless if it is a not‐for‐profit organization or a corporation. However, GINA’s protections in employment do not extend to the US military or employees of the federal government.
As we come upon the anniversary of The Genetic Information Nondiscrimination Act, our team at Accurate Background is grateful for the protection it provides. Because of this act, a person can feel at ease talking about health history, and can take comfort in knowing a person can opt into genetic testing or programs to learn about health risks, without fear of genetic discrimination. GINA allows everyone to make important lifestyle and medical decisions without fear of discrimination, which is why Accurate celebrates this instrumental act.