Welcoming GINA into the Workplace

The most recent layer of federal antidiscrimination law took effect this past weekend – to the ADA, Title VII, FMLA and other federal and state laws, employers can add another: the Genetic Information Nondiscrimination Act. Title I of this new law (called GINA) took effect in May 2009, prohibiting health insurers and group plans from using genetic information to deny coverage or set payment rates. Title II now joins the fray, and with it brings prohibitions that make their way into almost every workplace. Under Title II, an employer may not “discriminate against any employee with respect to the compensation, terms, conditions, or privileges of employment … because of genetic information.”

While a long time in the making (13 years of (often procedural) debate), in the end, there was little argument in Congress that this law was needed – the Senate approved it unanimously, and the House of Representatives had only one vote against it. As early as January 2001, the Council for Responsible Genetics claimed hundreds of documented cases of genetic discrimination and/or fear of genetic discrimination in its Genetic Discrimination: Position Paper (pdf). In a 2007 survey (pdf), the Genetics and Public Policy Center found that 92% of participants expressed concerns that a genetic test could be used in harmful ways against a person. Last summer, we reported on Major League Baseball’s genetic testing to verify the reported ages of certain Latin American prospects. This past month, the University of Akron made headlines over a new policy requiring job applicants to turn over DNA samples, and in the process energized the Ohio chapter of the ACLU.

Despite such surveys and anecdotal reports, there have been questions about the necessity of this legislation. Management representatives and employment attorneys point to more than 40 states having laws that already prohibit this kind of discrimination, with almost no resulting litigation. And simply put, the usual employer is just not interested in genetic information (at least at this time). But as with any new law, employers need to pay attention – GINA brings with it another private right of action, with jury trials and damages patterned after the Civil Rights Act.

With GINA now a reality, the focus shifts to the implementation stage and finding out whether Congress struck the right balance in its new legislation. With any new law, Congress speaks (thou shalt not discriminate), an agency interprets (to “discriminate” is to …), and the courts ultimately decide (nice try, but to “discriminate” is to …). The Equal Employment Opportunity Commission (EEOC) is the agency charged with issuing the regulations that interpret Title II of GINA, and then investigating subsequent claims that employers have violated GINA. The EEOC published a proposed rule in early March and received more than 40 responses during the 60-day public comment period.

To highlight a few, the National Small Business Association urged the EEOC to provide “clear guidelines and practical examples” so that GINA does not become an “overly cryptic or unclear law.” The ACLU argued that certain exceptions within GINA (such an employer’s inadvertent acquisition of genetic knowledge through publicly available materials or “water cooler” conversation) be narrowed. And several research entities provided input on definitions ranging from “family member” to “genetic test”. On August 7th, the EEOC confirmed that a proposed final rule was approved and sent to the White House Office of Management and Budget for review and approval. Once the rules are published, the judicial interpretation will begin, and we will be able to tell whether GINA has any impact on the employers of our country, or if its primary purpose is as a psychological tool, useful in allaying the public’s fear of genetic discrimination.

With time (and the development of legal precedents), the answer to the question of whether Congress struck the right balance will become apparent. Even with GINA just out of the gate, certain cases are easy – the often cited example (pdf) of Kim the social worker, for example. Kim revealed during a staff workshop that she had been the primary caregiver for her mother, who died of Huntington’s disease. With this family history, Kim has a 50% chance of developing the disease herself. One week after this revelation, and despite outstanding performance reviews in the previous months, Kim was fired. Kim’s story is precisely the kind of discrimination that GINA seeks to prevent with its prohibition on using genetic information in employment decision-making.

But other cases aren’t so easy (though perhaps they now are, thanks to GINA). We previously reported on basketball player Eddy Curry’s negotiations with the Chicago Bulls in 2005. After Curry was diagnosed with an irregular heartbeat and an enlarged heart, the Bulls insisted on a genetic test for hypertrophic cardiomyopathy (HCM) before extending Curry’s contract. Curry refused, and the Bulls traded him to the New York Knicks. The Bulls pointed to numerous cases of basketball players with HCM who collapsed and died (former Boston Celtics guard Reggie Lewis and Loyola Marymount star Hank Gathers). Had this issue arisen today, GINA would not be forgiving to the Bulls. As currently drafted, GINA does not contain an exception permitting employers to request genetic testing (or even genetic information) for potentially life-threatening conditions, such as HCM. To this point, the EEOC has clearly stated that an employer cannot reassign someone with a family medical history of heart disease from a job believed to be too stressful and capable of leading to heart-related problems.

Taking this example off the basketball court and into our everyday lives, are there other circumstances in which genetic tests should be permitted, or even required? Should your airline pilot be in the skies, or the semi-truck driver in the lane beside you, when family history indicates that a heart attack could happen at any moment? Where significant on-the-job safety issues are at stake, do we really want a blanket prohibition that precludes consideration for public safety? Even the Americans with Disabilities Act has a narrow “direct threat” exception for disabled employees if an employer is able to prove that that an employee is a direct threat to the health or safety of himself or others. Should a similar exception exist for GINA, or are we comfortable knowing that employment opportunities will never be reduced – and potential employment risks never addressed – based on probabilities or possibilities that have yet to materialize?