GINA and Genetic Testing for Employment

The advancement of bioscience allows scientists to explorer human’s genetic makeups. Genetic information can be used to assess a person’s genetic risks and health conditions and to predict one’s future disease onsets. While genetic testing can benefit people in many ways such as disease prevention and treatment, it may also adversely affect their career and life by genetic discrimination. When genetic tests become increasingly available, people worry that any genetic information showing tendencies toward disease could negatively impact their insurance premiums and job applications. Due to fear of disclosing genetic conditions, people may avoid taking valuable genetic tests, seeking necessary treatments, and participating in genetic research. This could cause a public health threat and hinder future development of genetic science (Hudson, 2007). In workplace, employers may use genetic information to make inappropriate personnel decisions. There were cases that employees were accused for using genetic testing to discriminate employees. For example, in the case of Norman-Bloodsaw v. the Lawrence Berkeley Laboratory, the plaintiffs sued their employer for “allegedly targeting blacks and women by testing for sickle cell anemia and pregnancy, respectively” (Varner, 2011, p. 206).

To address concerns of genetic testing and protect Americans against genetic discrimination, Congress passed the Genetic Information Nondiscrimination Act (GINA) which was signed into law by President Bush in 2008. GINA prohibits “employers and health insurers, both group and individual, from denying employment or insurance to a healthy individual based solely on his or her genetic predisposition to develop a disease” (Abiola, 2008, p. 856). Under the protection of GINA, people are able to take full advantage of genetic medicine without fear of discrimination.

This article discusses the application and interpretation of GINA in the business environment. Concerns of ethical issues relevant to genetic testing and genetic information are discussed as well. This article also provides a guideline about dealing with genetic information in organizations. The goal of this article is to analyze GINA applications in workplace and recommend enhancements of human resource policies for implementation of GINA against genetic discrimination.

GINA Applied in Workplace

GINA makes it clear that neither genetic information nor family health history can be used by employers for making personnel decisions against employees. Insurance companies cannot reduce coverage or increase premiums based on an individual’s genetic information. According to Areheart (2012), GINA generally forbids an employer’s acquisition and use of genetic information, requiring a “genomeblind” approach to protecting genetic information. In addition, “employers and health insurers are not allowed to request or demand a genetic test under the law” (Petruniak, Krokosky, & Terry, 2011, p. 15).

In a company with more than 15 employees, if a worker feels he or she has been discriminated against by the employer as a result of genetic testing, the worker can first file a claim with the Equal Employment Opportunity Commission (EEOC). The EEOC will open a case with an investigator assigned to it. According to Petruniak, Krokosky, and Terry (2011), the investigator will contact the employer and attempt to resolve the situation through mediation. A lawsuit may be filled if necessary. Because any lawsuit could damage a company’s reputations hurt its business, an employer must take genetic discrimination seriously.

According to Areheart (2012), GINA illustrates how the values of privacy and antidiscrimination may be allies, and it may also “represent a possible trend in employment discrimination toward privacy” (p. 710). As Areheart (2012) explained, when consideration of a trait is forbidden, it becomes unnecessary to disclose information pertaining to the trait, therefore strong privacy rights can be granted to individuals possessing the trait. Hence the pass of GINA into law can “ensure privacy rights for genetic information by generally prohibiting employers from considering the ‘forbidden trait’ of genetic information” (Areheart, 2012, p. 710).

There are limitations on GINA applied in the work environment. While it is against the law to hire, fire, or promote a person based on his or her genetic test, both insurers and employers may be allowed to acquire and access one’s genetic test results in certain situations. Under the law, “insurers may request voluntary genetic tests for research purposes, and employers may use tests to assess the biological effects of toxins in the workplace” (Abiola, 2008, p. 856). Also, GINA is not applicable to members of the military, federal employees enrolled in the Federal Employees Health Benefits program (FEHB). Employers with fewer than 15 employees are exempted (Petruniak, Krokosky, & Terry, 2011).

Ethical Considerations of Genetic Testing

Genetic tests include “tests that assess genotypes, mutations, or chromosomal changes” (Abiola, 2008, p. 857). Genetic tests can be used “to diagnose hereditary diseases, to provide information about susceptibility or risk of developing a disease, to evaluate the likelihood of a person’s positive or negative reaction to a medication and to identify an individual and/or their relatedness to others” (Williams-Jones & Ozdemir, 2008, p. 34). Today many biotech companies have started to market genetic testing services to individuals and businesses. According to Williams-Jones and Ozdemir (2008), the major ethical issue of genetic testing service is consumer privacy. To protect customers’ genetic information, these companies must implement strong privacy policy and data security practices. Another ethical concern about genetic testing service is inadequate advertising which may fail to disclose limitations of test results and the predictive power. As Williams-Jones and Ozdemir (2008) stated, “the impact of misleading or inaccurate information can be profound” (p. 36) when consumers are emotionally hurt and make wrong decisions for their lives.

While individuals use genetic testing to assess their health outcome, employers may be interested in individuals’ genetic information to form an opinion about an employee or applicant. According to Varner (2011), if an employer believes that genetic analysis can help make employment decisions, increase workforce quality, or reduce replacement costs, then “it will more likely engage in genetically discriminatory behavior to maximize profits” (p. 202). Therefore a serious ethical consideration associated with having information gained from genetic testing is genetic discrimination in workplace. Because a corporation’s goal is to maximize shareholders’ profitability, the corporation rationally wants to hire those most likely suited to a given task. Therefore employers would desire to genetically screen employees and job applicants. Obviously, it is unfair to take one’s generic information into employment consideration because “an individual’s genetic makeup is not under his or her control, he or she should not be discriminated against as a result of a genetic test” (Raithatha & Smith, 2004, p. 395). Also, as Varner (2011) mentioned, “just because a person has a genetic probability of developing a disorder does not necessarily mean that the person will ever actually develop the disorder” (p. 204). Hence genetic discrimination is both groundless and unethical.

Before GINA, genetic test could be a new method of employment discrimination. Although laws such as the Rehabilitation Act and the Americans with Disabilities Act (ADA) protected employees from genetic discrimination to some degree, employers might get around the law through unethical practice. According to Zeitz (1991), if employers discovered undesirable genetic information among their employees, they could still “articulate a legitimate non-discriminatory business reason for its employment decision” (p. 232). For example, the employer might claim that “the defect makes an individual more susceptible to workplace hazards, or simply that the potential exists for higher health care costs” (Zeitz (1991, p. 232).

After GINA was signed into law, employers are prohibited from genetic discrimination, thus no decisions on recruitment, promotion, or termination can be linked to genetic information (Abiola, 2008, p. 859). Employers now face costly liability claims for the violation of GINA if they misuse genetic screening tests. Sometimes it is difficult to determine whether or not an employer’s decision is related to genetic information thus it is up to the court to judge if the affected employee appeals.

Dealing with Genetic Information

Genetic information includes “information about an individual’s genetic tests and the genetic tests of an individual’s family members, as well as information about any disease, disorder, or condition of an individual’s family members” (Areheart, 2012, p. 706). In order to help organizations properly handle employees’ genetic information and related issues, this article presents policy recommendations in the following areas of human resources management.

Enhancing Privacy Policy

Because GINA “grants employees strong privacy rights by prohibiting any employer consideration of genetic information” (Areheart, 2012, p. 718), an organization needs to enhance its privacy policy regarding genetic information. In general, it is not necessary for a company to know an individual employee’s genetic makeup, thus a guideline should instruct HR staff not to collect genetic information from job applicants and not to ask genetic related questions in interview.

Accessing Genetic Information

In certain situations, it may become necessary for the company to access workers’ genetic information. For example, employers need to use the information to monitor the biological effects of toxic substances in the workplace or to comply with certification requirements of family and medical leave laws (Abiola, 2008, p. 858). In this case, a HR policy must cover procedures for accessing genetic information. Managers and supervisors should be trained to handle employees’ genetic information properly.

Conducting Genetic Test

In general, employers should avoid conducting genetic tests on employees. However, if a type of business does need such genetic screening and if it is allowed by the law, the company should carefully control the administration of the test and “make sure employers only test for the specific traits in question” (Varner , 2011, p. 206).

Dealing with Voluntary Disclosure

Even through an employer does not ask for genetic information, an employee may choose to disclose it. A worker may discuss his or her genetic makeup with the employer for many reasons, such as concerns about the work environment, requesting job change, or asking for accommodation. A company should develop a policy for managers to handle this situation.

Providing Accommodation

As for accommodation, GINA is different from ADA. According to Areheart (2012), GINA employs “an anticlassificationist scheme that, unlike the ADA, bars an employer from considering such genetic information and classifying on that basis” (p. 712). However, with consideration of genetic information, an employer may be able to provide an accommodation for a worker with genetic predisposition in order to prevent or slow the onset of the particular genetic condition (Areheart, 2012). Thus an organization must carefully craft a policy for genetic based accommodation.

Safeguarding Genetic Information

Organizations face high risk of security and vulnerability on genetic information, thus they “need to guard against even unwittingly divulging genetic information; they could face large fines as penalties for breaking the law” (Allison, 2008, p. 596). Administrative policy must be placed to guide HR staff to secure genetic information. Technological procedures should be developed to safeguard the information in database behind firewalls to prevent internet hacking.

Conclusion

Increased use of genetic testing had raised concerns about generic information privacy and caused fear of adverse impacts by genetic conditions. Incidents had been reported that genetic information was used against employees in workplace. GINA signed into law makes it illegal to discriminate against people on the basis of genetic information. GINA prohibits the use of genetic information in all employment decisions and places strict limits on the ability of employers to acquire genetic information.

Ethical considerations of genetic testing include consumer privacy for the test results managed by test providers and promotion of genetic test service with inaccurate advertising. The biggest ethical concern in workplace is the use of genetic test for employment discrimination. Employers intend to use all information to make personnel decisions; genetic information if available, may be taken into consideration. In the past, an employer might articulate a legitimate nondiscriminatory reason for its discriminative actions on the basis of genetic information. The pass of GINA has shielded employees with full protection from genetic discrimination.

To successfully implement GINA in workplace, an organization should enhance its privacy policy regarding genetic information, provide appropriate procedures for genetic information collection and genetic testing, develop policies for handling employees’ voluntary disclosure and genetic based accommodation, and ensure administrative and technological capacities for safeguarding genetic information database.

References

Abiola, S. (2008). Recent Development in Health Law: The Genetic Information Nondiscrimination Act of 2008: ‘First Major Civil Rights Bill of the Century’ Bars Misuse of Genetic Test Results. Journal of Law, Medicine & Ethics, 36(4), 856-865.

Allison, M. (2008). Industry welcomes Genetic Information Nondiscrimination Act. Nature Biotechnology, 26(6), 596-597.

Areheart, B. A. (2012). Information privacy: GINA, privacy, and antisubordination. Georgia Law Review, 46, 705-718.

Hudson, K. L. (2007). Prohibiting Genetic Discrimination. New England Journal of Medicine. 356, 2021-2023. doi:10.1056/NEJMp078033

Petruniak, M., Krokosky, A., & Terry, S. F. (2011). The Genetic Information Nondiscrimination Act (GINA): A Civil Rights Victory. Exceptional Parent, 41(10), 15.

Raithatha, N. & Smith, R. D. (2004). Disclosure of genetic tests for health insurance: Is it ethical not to?. Lancet, 363, 395-396.

Varner, A. (2011). Title II of the Genetic Information Nondiscrimination Act and its promulgating regulations: Analyzing employer acquisition of employee genetic information in the context of fairness and privacy. Labor Law Journal, 62(4), 202-216.

Williams-Jones, B., & Ozdemir, V. (2008). Challenges for corporate ethics in marketing genetic tests. Journal of Business Ethics, 77(1), 33-44. doi:10.2307/25075539

Zeitz, K. (1991). Employer Genetic Testing: A Legitimate Screening Device or Another Method of Discrimination?. Labor Law Journal, 42(4), 230-238.