The Genetic Information Nondiscrimination Act: Fear Factor or Fantasy Island?

The Genetic Information Nondiscrimination Act, or GINA, was signed into law on May 21, 2008.¹ Its implications are hard to predict for a variety of reasons-for example, the scope of the law is limited to employment and health insurance; regulations for implementing it have yet to be written; and its power to protect "genetic information" will only be appreciated once it is challenged. More importantly, however, its implications are difficult to assess because of the "Alice in Wonderland" dimension of the genetic landscape-risks and benefits may be distorted, appearing to be different from what they actually are. And arriving at the hoped-for destination-personalized genetic medicine, where knowledge is power and health care is safer, more affordable, more equitable, and more effective-may require a trip down the proverbial rabbit hole.

The first version of GINA legislation was introduced in 1995, shortly after the Human Genome Project bore its first fruits. The genes for cystic fibrosis, Huntington Disease, and breast cancer had recently been identified. Many of the psychosocial concerns about genetic information could be addressed through education, a better informed consent process, and counseling. However, the problem of discrimination seemed to require a regulatory approach.

Examples of genetic discrimination are both apocryphal and anecdotal. Yet concern about discrimination is cited as an important reason that people forgo either clinical genetic testing or participation in genetic research.² The hope is that GINA will be a necessary step on the way to individualized medicine based on genetics-even if it is not a sufficient one-because it addresses this perceived barrier of genetic discrimination.³ However, the very idea of GINA has been criticized because it reinforces a "genetic exceptionalism"-the concept that genetic information is somehow different from other kinds of medical information-rather than addressing the underlying problem, which is that health care coverage is limited for those who are ill. Some critics also fear that GINA may mislead people into thinking that untested protections are more robust than they really are.⁴

Predicting what impact GINA will have or should have on the public's behavior regarding either clinical genetics or genetics research is a difficult task. Will it provide enough reassurance to alter the behavior of people whose fear of discrimination has influenced a decision to avoid genetic research or clinical genetic tests? Even if it does allay these fears, it may still have limited impact on their decisions. In some cases, people may have other concerns about genetic research and testing-for example, they may be ambivalent about whether they want to know their risk of future disease, or they may worry about its impact on their family relationships-but discrimination is a more socially acceptable explanation. For others, their concerns may be inchoate, but genetic discrimination provides a concept for them to get behind that is easy to understand and articulate.

It is difficult for most of us to appreciate the complex mix of reasons, emotions, and circumstances that influence our own decisions and behaviors, let alone those of others. For example, people who decide not to seek medical care for a worrisome symptom offer a variety of explanations: "I don't like doctors," "I was worried I might have cancer," or "medicine is simply about taking advantage of sick people to make money," to name a few. Clearly, these explanations should be taken seriously because they point to genuine concerns that require a concerted response. Yet behavioral scientists who study the complex nature of health care decision-making and behavior appreciate that behavior may only be partially related to factors people are aware of and talk about.⁵

As a result, whether GINA will indeed result in people making different decisions about health care or participation in research is far from clear. People may offer other explanations for their decisions and behavior once discrimination is off the table. Some may just transfer their expressions of reluctance about genetic testing to issues like cloning and stem cell research, even though these are not directly related to genetic testing. Education can clarify that these other issues are...