Understanding GINA and How GINA Affects Nurses

Abstract

The Genetic Information Nondiscrimination Act (GINA) is a federal law that became fully effective in 2009 and is intended to prevent employers and health insurers from discriminating against individuals based on their genetic or family history. The article discusses the sections of GINA, what information constitutes genetic information, who enforces GINA, and scenarios in which GINA does not apply. Also discussed are the instances in which an employer may request genetic information from employees, including wellness or genetic monitoring programs. Finally, the article offers a look at how GINA affects nurses who are administering wellness or genetic monitoring programs on behalf of employers.

Imagine an employee filing a work-related injury claim because of carpal tunnel syndrome acquired during the course of employment. The employer has requested genetic testing to determine whether this employee has a genetic marker that has predisposed this worker to developing carpal tunnel syndrome. The occupational health nurse is aware that the employer is requesting this testing in hopes of decreasing the monetary award for or eliminating in total the workers’ compensation claim. However, the employee refuses the genetic testing, and the employer threatens to terminate the employee, which will affect not only the employee’s salary but also the employee’s benefits. What should the occupational health nurse do to support both the employee and the company?

Unfortunately, the above situation was reality for employees in Equal Employment Opportunity Commission v. Burlington Northern Santa Fe Railway Co., 2002 WL 32155386 (E.D. Wis. 2002). Not only have employers used genetic testing to decrease workers’ compensation claims, but employers have also used genetic testing in hiring, firing, and reassigning employees. In 2004, studies showed that many employers tested workers for breast and colon cancer, Huntington’s Disease, and sickle cell anemia (Beyer, 2009). Those same studies showed that over half of those employers used the genetic information to determine employees’ terms and conditions of employment (Beyer, 2009). Although employers have been guilty of using genetic information to affect employment, insurance companies have also used genetic information to affect insurance rates or even refuse insurance coverage (Beyer, 2009). Although cases of genetic discrimination by employers and insurance companies are rare (Beyer, 2009), federal lawmakers determined any genetic discrimination was intolerable and enacted GINA or the Genetic Information Nondiscrimination Act.

President George W. Bush signed GINA into law in 2008 after it was passed in the Senate unanimously and in the House with a vote of 414 to 1 (National Human Genome Research Institute [NHGRI], 2012). The law became fully effective in May 2009. GINA was designed to protect individuals from discrimination by employers and health insurance companies based on genetic information. Genetic information is defined in the law but in summation, genetic information includes an individual’s genetic tests, an individual’s family members’ genetic tests, genetic tests of any fetus, genetic testing performed for clinical research, and the manifestation of diseases or disorders in family members (i.e., family history; Department of Health and Human Services [DHHS], 2009). Specifically, GINA prevents health insurers from requesting or requiring genetic information from individuals and their family members and prevents health insurers from using genetic information for decisions regarding coverage, rates, and pre-existing conditions (DHHS, 2009). GINA prevents employers from requesting or requiring genetic information and prevents employers from using genetic information to influence conditions of employment (e.g., hiring, firing, and promotions; DHHS, 2009).

GINA is a federal law and meant to be a “baseline” for employers and health insurers. Many states had laws regarding genetic discrimination prior to the enactment of GINA; however, some of the states’ laws were more lenient than GINA. Now that the federal government has enacted GINA, states must comply with GINA at a minimum, but can have laws that are stricter. Because most genetic discrimination cases have arisen from the workplace and because employment scenarios are the most likely situation in which occupational health nurses will encounter GINA, this article will focus on the employment portion of GINA.

What Do Employers Need to Know About GINA?

GINA does not make all genetic information “off-limits” for employers; therefore, employers must know which uses of genetic information are unlawful and which uses are allowed by law. As a general rule, GINA prohibits employers from requesting or requiring genetic information from employees, but a few exceptions are discussed below. Along with preventing employers from using genetic information in hiring and firing, GINA also prohibits employers from determining compensation and privileges or denying employees opportunities, training, and admission to employment programs based on genetic information.

Although GINA generally prevents employers from requesting or requiring genetic information, employers may obtain genetic information about employees and their family members in certain instances. Employers may lawfully secure genetic information when a labor organization requests or requires family health histories to comply with certain government acts, such as the Family and Medical Leave Act of 1993 (U.S. Congress, 2008). In addition, employers can legally receive genetic information that is commercially and publicly available, including information found in newspapers, magazines, and books (U.S. Congress, 2008). However, genetic information disclosed in court records and health-related databases are not considered information that is publicly or commercially available (U.S. Congress, 2008). Although an employer is allowed to secure genetic information in these circumstances, the employer is still prohibited from using the genetic information to discriminate against an individual employee.

Despite GINA’s proclamation that employers are not allowed to request or require genetic information, certain exceptions prevail. Employers can request or require genetic information if “the employee provides prior, knowing, voluntary, and written authorization” (U.S. Congress, 2008, p. 27). Furthermore, employers can request or require genetic information “where the employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or for purposes of human remains identification” (U.S. Congress, 2008, p. 28), which allows employers to have DNA identification markers to detect sample contamination and assure quality control. In the same vein, employers can request or require genetic information “where the information involved is to be used for genetic monitoring of the biological effect of toxic substances in the workplace” (U.S. Congress, 2008, p. 28). When an employer is requesting or requiring information for the purposes of genetic monitoring, the employee must knowingly and voluntarily consent to the monitoring or the monitoring must be required by federal or state law (U.S. Congress, 2008). In addition, the employer must provide written notice of monitoring to the employee, inform the employee of individual monitoring results, and comply with federal or state monitoring regulations (U.S. Congress, 2008). Finally, the employer may request or require genetic information when “health or genetic services are offered by the [employer], including such services offered as part of a wellness program” (U.S. Congress, 2008, p. 27). A caveat to wellness programs, however, is that the employee must voluntarily provide genetic information for wellness programs, and the employer must emphasize no penalty will be instituted for failure to provide genetic information (U.S. Congress, 2008). For example, if an employee is offered an award, such as money, for completing a health risk assessment that includes a section for family history, the employer must inform the employee that the award will be given regardless of whether the family history section is completed.

These provisions affect occupational health nurses because these nurses may be responsible for enrolling and maintaining employees in employer-sponsored wellness or genetic monitoring programs. On its face, the law appears to allow occupational health nurses, through wellness or genetic monitoring programs, to gather genetic information about employees through personal and family health histories as well as genetic testing even if the occupational health nurse is not treating or caring for employees based on these diagnoses. The occupational health nurse must ensure, however, that employees are providing information voluntarily and that no employee is being penalized in any way for refusing to disclose genetic information. In addition to verbally informing employees, nurses enrolling or maintaining individuals in wellness or voluntary monitoring programs should ensure that the voluntary aspect of providing genetic information and lack of penalty for refusing to provide this information is also given to employees in writing. If occupational health nurses are managing genetic monitoring programs required by law, these nurses must ensure that employees are informed of the monitoring process and that all monitoring complies with legal requirements, which may include collaborating with the company’s human resources department or legal counsel. Whether an employer is requesting or requiring information through a wellness or genetic monitoring program, the licensed health care professional or genetic counselor will receive individually identifiable genetic information (U.S. Congress, 2008). The employer may receive only aggregate information that does not disclose the results of individual testing (U.S. Congress, 2008). Occupational health nurses and other health care professionals involved in wellness or genetic monitoring programs have a duty to safeguard individually identifiable information and only disclose aggregate information to employers. Preventing employers from accessing a specific individual’s genetic results is another safeguard to prevent genetic discrimination even if genetic information is divulged by the worker.

Who Enforces GINA and What Are the Consequences for Violating GINA?

Because GINA has two main sections, one for health insurers and the other for employers, multiple federal agencies enforce GINA. The Department of Labor, Department of the Treasury, and DHHS (2009) enforce the portion of GINA pertaining to health insurers. If these federal agencies determine that health insurers are violating GINA, a period of correction can be offered, and then, if the discrimination is not rectified, the federal agencies assess a monetary penalty (U.S. Congress, 2008). The penalty amount is determined by the number of violations, whether the penalty was due to negligence or willful neglect, and whether the health insurer attempted to practice due diligence in assuring that no discrimination occurred (U.S. Congress, 2008).

Although multiple agencies enforce the health insurers’ portion of GINA, the Equal Employment Opportunity Commission (EEOC) is responsible for the employer portion of GINA (DHHS, 2009). If an employee believes that an employer has violated GINA, the employee should file a charge of discrimination with the EEOC (2014) within 180 days of the violation. According to GINA, if the state has a state or local law prohibiting genetic discrimination in addition to GINA, then the timeline for filing a charge of discrimination is extended to 300 days (EEOC, 2014). The employee wishing to file a charge under the state or local law can file the charge with the state agency, which is generally known as the Fair Employment Practices Agency (FEPA; EEOC, 2014). If the employee files a charge with either the EEOC (2014) or the FEPA, the charge is automatically filed with the other agency to protect the employee’s rights under both state or local and federal law. Once the charge is filed, the EEOC (2014; or FEPA) notifies the employer and attempts to reach a voluntary settlement with the employer through mediation. If the employer refuses to settle, the EEOC (2014) then investigates the charge of discrimination. Once the investigation is complete, the EEOC (2014) notifies the employee or individual who filed the charge as to whether the employee or individual has a right to sue. The EEOC (2014) may even sue on the individual’s or employee’s behalf depending on the circumstances. More than 1,000 charges have been filed under GINA as of 2013, and some charges have produced significant settlements (NHGRI, 2014). In EEOC v. Founders Pavillion, Inc., 13-CV-01438 (W.D. NY. 2014), the EEOC settled a discrimination lawsuit against Founders Pavillion, Inc., a nursing and rehabilitation center, for US$370,000 after the employer requested family health histories as part of the pre-placement examination (NHGRI, 2014). As a side note, individuals or employees who identify discrimination based on their genetic information may have additional remedies available under other federal and state laws in addition to those remedies available under GINA.

When Does GINA Not Apply?

GINA does not protect individuals from genetic discrimination in some situations. GINA does not apply to life insurance, disability insurance, or long-term care insurance (DHHS, 2009). In addition, GINA does not apply to employers with less than 15 employees (DHHS, 2009). Furthermore, GINA does not apply to anyone enlisted in the military or receiving health insurance from TRICARE, Indian Health Services, the Veterans Health Administration, or the Federal Employees Health Benefits Program (NHGRI, 2014). Finally, GINA does not restrict the practice of medicine or the authority of health care professionals, regardless of the health care professionals’ affiliation with the employer (Genetic Alliance, 2014). Health care providers may recommend employees undergo genetic testing for the employee’s health-related benefit.

Conclusion

In summary, GINA is a federal law designed to protect individuals from discrimination by employers and health insurers based on individuals’ genetic and family history. Because GINA is a federal law, states may have stricter laws than GINA, so employers and health insurers must be familiar with state laws as well as GINA to prevent violations. Although GINA generally prevents employers and health insurers from requesting or requiring genetic information, employers and health insurers may request or require genetic information about an individual in certain situations. Occupational health nurses and other health care professionals who are administering wellness or genetic monitoring programs should be familiar with GINA to protect employees from discrimination based on their genetic information. In addition, occupational health nurses and other health care professionals who are administering wellness or genetic monitoring programs should be familiar with GINA to ensure that employers are complying with GINA and not in danger of violating GINA, which could result in costly penalties and negative press for the employer.