Despite the rapid advancement of genetic science over the past several decades, concerns eventually arose nationwide that Americans were not taking advantage of the wide range of genetic testing available to help prevent serious medical conditions. The fear was that a person might be discriminated against by employers or insurance companies based on a perceived propensity for such conditions if discovered through genetic testing. Consequently, in 2008, the U.S. Congress enacted the Genetic Information Nondiscrimination Act (GINA) to prohibit employers and group health insurance providers from discriminating against individuals on the basis of genetic information.
GINA became effective in 2009. At that time, more than 30 states already had laws prohibiting genetic discrimination in the workplace, but GINA now makes genetic discrimination by employers and health insurers unlawful throughout the entire country.
GINA prohibits employers and health insurers from using genetic information as a basis for almost any decision relating to employees and insured individuals respectively. This means that employers are not allowed to use genetic information when making employment decisions, such as decisions to hire, fire, promote, demote or to set an employee's wages. Likewise, group health insurers cannot make decisions, such as granting or denying coverage or setting an individual's premiums, based on an individual's genetic information.
The law also contains a general prohibition preventing employers from collecting or requesting genetic information except in limited circumstances, such as acquiring information necessary to administer medical leave pursuant to the Family and Medical Leave Act (FMLA), to determine an employee's ability to perform the essential duties of his or her position (i.e., fitness for duty), or to administer an employer-sponsored health insurance or “wellness” program. GINA also includes a so-called “water cooler” exception, which provides that employers do not run afoul of the Act if they learn of genetic information through an inadvertent disclosure by the employee. This is meant to protect employers in the event an employee mentions a family member's medical condition to a supervisor during a casual conversation. A similar exception protects employers if they accidentally discover genetic information that is commercially or publicly available, such as information discussed in a newspaper story, during a television program or in an Internet article.
GINA's prohibition against the collection of genetic information also applies to health insurers except in limited circumstances. For example, if an individual has a genetic test, his or her health insurer may lawfully collect the minimum amount of information necessary from that test to determine the proper insurance coverage and/or any payment that may be required. The Act also allows a health insurer to collect genetic information as part of certain voluntary research projects.
GINA also prohibits health insurers from offering a premium discount or financial reward in exchange for the individual's provision of genetic information, including family medical history, health assessment or other questionnaire. However, the Act allows health insurers to offer a financial incentive for participating in health programs or testing that does not result in the disclosure of genetic information, such as an annual physical examination or participation in a disease management or prevention program.
WHAT IS GENETIC INFORMATION?
Genetic information includes the results of any genetic test taken by an individual or by an individual's family members, as well as the manifestation of any disease, disorder or other condition in those family members (i.e., family medical history). This means that employers and health insurers cannot request or make decisions regarding an individual based on any genetic test taken by that individual or based on the health condition or cause of death of anyone related to the individual up to the fourth degree (e.g., great-great-grandparents or the children of first cousins).
In fact, GINA is so protective of genetic information that it prohibits the consideration of the health condition of family members even if they are related by marriage or adoption-meaning those who likely share no genetic traits with the individual whatsoever!
Employers must also keep known genetic information confidential. GINA only allows disclosure of such information under limited circumstances, such as an order from a court or public health agency or a written request from the employee himself/herself.
NOT PROTECTED BY GINA
Genetic information for purposes of GINA does not include information relating to a condition that is currently manifested in an individual, so GINA does not prevent employers or health insurers from using information about an individual's current health when making decisions. However, an employer is generally not permitted to consider any existing health impairment that rises to the level of a “disability” when making a decision affecting that person's employment under the Americans with Disabilities Act (ADA).
Furthermore, GINA's prohibitions do not prevent or obstruct an individual's healthcare provider from obtaining genetic information or taking genetic tests and, in fact, the purpose of the Act is to encourage the collection of this information by an individual and his or her healthcare provider. GINA also does not apply to providers of insurance other than health insurance, such as life insurance, disability insurance or long-term care insurance.