Case Study in Genetic Discrimination
By Nazin Sedehi and Laura Rivard
Introduction:
Predictive testing for genetic disorders and diseases became a reality beginning in the 1990s. At the time, many expressed concern over genetic privacy and potential discrimination by health insurance companies and employers. The past two decades saw a dramatic increase in rates of genetic testing, but reports of subsequent discrimination were isolated. In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA). Briefly, the law prohibits health insurers from denying coverage or raising premiums based on genetic information. The law also stipulates that employers cannot use genetic information for hiring, firing, or promotion decisions. However, GINA applies only to individuals on group health insurance plans; persons with an individual health insurance plan, or those employed by a small business of 15 or fewer people, are exempt. A few other laws also cover genetic discrimination. For example, some believe the Americans with Disabilities Act of 1990 (ADA), which prohibits discrimination in employment, public services, accommodations, and communications based on a disability, should be interpreted to cover genetic discrimination. However, the law does not explicitly cover genetic discrimination, and a broad interpretation has not been tested in court.
Case Study:
Jim Sanders is a small business owner; he inherited a bakery from his father and is now the third generation in his family to run the business. The bakery currently has ten employees. Jim is interested in hiring one more employee, a web content editor, who can help launch the bakery's transition to online sales. Two candidates apply for the position and both are highly qualified with similar work experience and skills. After interviewing both candidates, Jim favors Candidate #1 by a small margin based on her creative vision for the bakery's website. However, soon after the interviews, he learns through a Facebook post that Candidate #1 has a genetic risk for adult-onset muscular dystrophy (a disease characterized by muscle wasting). The candidate is healthy as of now, but it is probable that the disease will manifest in the future. The genetic test cannot reveal how severe the muscular dystrophy will be, how quickly muscle degeneration will occur, or at what age it will onset. Jim and his wife Sandra have three children who are in high school and will be attending college soon. Jim knows that his business will not be able to withstand the financial burden associated with an increasingly disabled employee. Jim decides that he is not willing to take the chance, and he ends up hiring Candidate #2. Because his business is small with only 10 employees, the federal Genetic Information Nondiscrimination Act does not apply to him.
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I encourage you to be honest and place yourself in Jim's situation. Would you do what might be considered the "honorable" thing if it meant financial harm to YOUR family? Do small business owners deserve the GINA exemption since their resources are typically more limited?
