By Veronica Emilia Nuzzolo, MBA, MAOP
On May 21, 2008, President George W. Bush signed the Genetic Information Nondiscrimination Act of 2008 (GINA) into law. Congress enacted GINA because of the increased use of genetic testing. According to Congress as research progresses and new genetic information is presented these advances may result in the misuse of genetic information to discriminate in health insurance and employment, (GINA Section 2).
GINA is designed to prevent employment, health care, and health insurance discrimination. Current genetic tests can verify if an individual or family member are at risk for developing specific diseases. Several concerns and issues have been brought to the forefront of genetic testing such as denial of health care benefits or employment. GINA protects people from discrimination based on genetic information by restricting access and disclosure of genetic testing results.
The Equal Employment Opportunity Commission (EEOC) (2010) issued a final ruling implementing Title II of GINA. Title II protects prospective, current and former employees from discrimination against genetic testing information.
Statement of the Problem
Employment discrimination based on race, gender, religion, or age is unlawful. With the advances of medical technology discrimination laws are evaluating current laws to include protection against genetic discrimination. Genetic discrimination is considered discriminatory practices directed against an individual or family because of genetic abnormalities.
According to the Office of Technology Assessment (1983) genetic testing in the workplace is becoming more common. In 1982 government surveys indicated that 1.6% of companies use genetic testing as employment criteria. The American Management Association (AMA) (1997) conducted a survey and concluded that 6-10% of employers were conducting genetic testing as a pre-employment screening mechanism.
Geller’s (1996) survey of approximately 1,000 “at risk” people indicated that 22% believed that they were being discriminated against based on testing results. The U.S. Department of Labor (2010) concurs that the use of genetic information for employment criteria is becoming a serious workplace concern.
The American Civil Liberties Union (ACLU) (2000) verified that 12 states have implemented laws to protect from genetic discrimination.
Ethical Issues of Genetic Testing In Employment
GINA has been interpreted and applied within the business environment to protect employees from genetic pre-employment selection processes. According to the ACLU (2000) there are many unresolved ethical and legal issues pertaining to genetic testing. One of the first issues addressed is the validity of workplace testing results. Currently there are no assurances that company testing is reliable scientifically.
There is no factual data to support claims that specific work environments elevate the onset of genetic diseases. The AMA (1997) determined that there is insufficient evidence to justify the use of genetic testing as a basis for employment decisions and Lupham, Kozma, and Weiss (1996) concluded that there is no significant data determining genetic abnormalities will result in occupational injury.
Psychological Issues of Genetic Testing in Employment
Psychological issues and concerns present upon feedback of results. In the workplace the question remains, who is qualified to feedback clinical results. How will people react to these results, and does either the employer or the employee even understand the results of his or her genetic test. These concerns are addressed in many articles appearing in the Hastings Center Report regarding feedback of medical information in the workplace.
The American Civil Liberties Union (ACLU) (2007) indicates that most healthcare providers and employers are not trained in genetics and do not know how to interpret results. The CLU also indicates that there are no genetic counseling requirements in many business settings. Because there are no requirements individuals may not fully understand the results of these tests and may have a significant psychological impact.
Cameron and Muller (2009) report on the health and psychosocial effects of genetic testing. The findings suggest that a limited understanding of genetic testing and testing results have direct impact on behavioral responses. The motivation to undergo genetic testing is very personal and Cameron and Muller (2009) conclude that recent evidence suggests that information regarding genetic risk can motivate health behavior change. The recommendation made by Cameron and Muller (2009) is the implementation of a proper health communications and counseling programs. They maintain that counseling can help promote positive responses and behavior change and that a family based healthcare model is recommended those who have undergone genetic testing.
Legal and Liability Issues of Genetic Testing In Employment
Geller (1996) researched company surveys and found that 62% of companies require medical examination as a hiring process. The greater percentage of employers stated that pre-employment screening tests are done to verify the use of illegal drugs. These surveys suggested that a low number of companies are requesting genetic testing. However, even though the surveys suggested few employers were using genetic testing with medical advances the belief is that there will be in an increase in the implementation of genetic testing in the workplace. Geller’s results indicate companies justify these decisions by determining lower recruitment and training costs; lower healthcare costs and liability, workplace safety, and to gauge susceptibility and exposure to environmental factors
According to Geller (1996) many ethical and legal issues have developed regarding the use and misuse of genetic science. One such legal issue is the use of employee genetic information by employers. Although some state laws have been implemented to protect against discrimination of genetic testing, no federal laws currently regulate the use of genetic information and employment related decisions.
The Americans with Disabilities Act (ADA) (n.d.) protects individuals against discrimination based on a disability. Currently the ADA does not have specific policies in place regarding genetic discrimination and the EEOC (2010) concurs that law’s must include protection against genetic testing and medical information gathering in the workplace.
Employers who treat people differently contingent upon the results of genetic testing may be held liable under current civil rights acts based on employment discrimination laws based upon race, gender, color, or religion.
Genetic screening in the workplace allows employers to examine job applicants and employees for specific inherited gene deficiencies. Genetic testing is used to detect hereditary conditions and should not be associated with one’s ability to do his or her job. In addition, the risk of discrimination is high and some employers could attempt to use the results of genetic test to discriminate against those individuals that they believe may be an insurance liability or individuals who may require additional health insurance benefits.
Employers could base employment decisions based on genetic information to screen out those who they believe may need sick leave or terminate employment prematurely because of health reasons in addition to considering costs associated with the recruitment process. Employment practices based on genetic predispositions may inevitably lead to employment discrimination resulting in costly litigation, unfit employment processes and denying people employment opportunities.
American Management Association (AMA) (n.d.), retrieved from http://www.amanet.org/Individual-Solutions.aspx
Cameron, L.D., & Muller, C. (2009). Psychological aspects of genetic testing, Current Opinion in Psychiatry. 22, 218-223. doi: 10.1097/YCO.0b013e3283252d80.
Equal Employment Opportunity Commission, (2010) 29 CFR Part 1635, Regulations under the genetic information nondiscrimination act of 2008. Final Rule. Retreived from http://www.gpo.gov/fdsys/pkg/FR-2010-11-09/pdf/2010-28011.pdf
Geller, Lisa, (1996), “Individual, Family, and Social Dimensions of Genetic Discrimination: A Case Study Analysis”. Science and Engineering Ethics, Vol. 2, Issue 1.
Lapham, E., Kozma, C., & Weiss, J. (1996). Genetic discrimination: Perspectives of consumers. Science, 274, 621-624.
The American Civil Liberties Union, (2007), retrieved from http://www.aclu.org/technology-and-liberty/genetic-testing
The Genetic Information Nondiscrimination Act of 2008, retrieved from http://www.genome.gov/24519851
The Hasting Center, (n.d.) Genetic Testing and Screening, retrieved from http://www.thehastingscenter.org/Issues/Default.aspx?v=246&gclid=CMaqve2VtrcCFYWe4AodskIALA The United States Department of Labor, 2010, retrieved April 2013, from http://www.dol.gov/
That was definitely a good call to implement this law. I agree with the previous comment as well, genetics are completely out of our control and to see someone be denied anything based on there genes; especially health insurance or employment would be a crying shame. How could you afford medical care without insurance? Especially if nobody would hire you?
Genetic discrimination, as with any other kind of discrimination, is absolutely unethical. Nobody has control of their genes, therefore no genetic variability should put anybody at risk of losing out on an employment opportunity. I’m glad to see that the country is fighting to defend against genetic discrimination, and that it’s working for the most part.