The controversy over individuals’ genetic information, their privacy, and the possibility of discrimination reared its head again in March, when the Republican-controlled House Committee on Education and the Workforce approved H.R. 1313 –Preserving Employee Wellness Programs Act. The bill, if it survives, is expected to be included in the Republicans’ larger repeal and replacement of the Affordable Care Act.
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The debate over H.R. 1313 is just one small part of the debate over workplace wellness programs, existing genetic privacy laws, employment discrimination, and employers’ efforts to control healthcare costs. Why is this a contentious issue, and how could the ability to collect genetic information from workers be useful to employers?
Genetic Privacy and Discrimination
In the early 1970s, genetic screening—some of it conducted without consent—was used to identify African Americans who carried a gene mutation for sickle cell anemia. The mutation did not guarantee that the individuals would develop sickle cell—many would never become ill—but the information was still used to discriminate against them in hiring. Forty-five years later, there are many more disease susceptibility markers that can be identified through genetic testing.
Even without sophisticated genetic testing, it is sometimes possible to determine enough about an individual’s genetic background to discriminate against those who may develop a heritable disease by using a simple medical history. For example, individuals whose family members have died of Huntington’s disease have hidden their medical histories when applying for jobs or enlisting for military service.
Because of concerns about discriminatory practices like these and other possible misuses of genetic information, both the Americans with Disabilities Act of 1990 (ADA) and the Genetic Information Nondiscrimination Act of 2008 (GINA) codified privacy protections for individuals’ genetic information. In general, employers are forbidden from medically evaluating employees except with respect to job-related factors (for example, the medical examinations required of truck drivers or the medical evaluations for workers who are required to wear respirators); group health insurance plans are forbidden from using genetic information for underwriting or enrollment eligibility purposes; and identifiable information cannot be released to anyone but the worker or a medical professional.
Some exceptions are allowed under the Family and Medical Leave Act (FMLA), as required for specific jobs (such as law enforcement), for the purpose of monitoring workers who are exposed to certain carcinogens or to radioactivity in the workplace, and for voluntary participation in a wellness program. In addition, workers’ genetic information provided as part of a workplace wellness program cannot be used in any incentive structure—unlike, say, participation in weight loss or smoking cessation programs.
According to employers, the patchwork of rules and exceptions makes thorough implementation of wellness programs difficult. That’s one of the things that H.R. 1313 was intended to address, but advocacy groups fear that the legislation is inadequately protective of individual privacy and nondiscrimination.
Tomorrow we’ll look at the ethics of handling workers’ genetic information, should you come into possession of it—for example, if you come across a relative’s obituary or another form of public notice that reveals something about a worker’s medical history.