Genes and Denial

My latest FindLaw column is about the Genetic Information Nondiscrimination Act (or "GINA"), which has passed both the House and the Senate, nearly unanimously, and now awaits the President's likely signature. In the column I discuss how unusually uncontroversial a path this legislation has taken by comparison to other nondiscrimination measures in the past. I propose that GINA places us in the position that John Rawls proposed for the creation of just rules: behind a veil of ignorance.

In this post, however, I want to focus on a different aspect of discrimination that is difficult to defeat: the role of denial. When healthy, wealthy, and wise people choose to spend their time with other people who are similarly blessed, they may do so in part to deny the reality of their own vulnerability to hardship and misfortune. Confronting the reality -- by being around people who have suffered -- makes more challenging the belief that everything works out for the best or that we will not have to face such painful circumstances. In a sense, such denial is a necessary component of survival -- if we were to feel a constant awareness of all that could go wrong and all of our vulnerabilities, we might feel too depressed to function. To the extent that seeing or spending time around the reality of suffering makes a healthy denial more difficult to sustain, we prefer to render the unpalatable reality invisible, often through discrimination.

Taking out insurance is, of course, to some degree, a crack in the foundation of denial. If we were truly sure that "that couldn't happen to us," then few people would want to spend their money on insurance. Yet most of us want to have insurance of all kinds and thereby evidence our covert recognition of realities that we otherwise choose to ignore. Interestingly, research suggests that some people construct insurance, irrationally, as a way to ward off the possibility of the undesired event occurring.

In the case of our genetic information, we aid in our own denial project by failing to be tested for genetic conditions. Yet at the same time, we tacitly acknowledge that our genes may have a prophecy of misfortune to reveal, by supporting legislation that protects against discrimination on the basis of flaws in our DNA. This raises at least one difficulty for those who have promoted GINA. If we are hoping --as some have said -- that more people will seek genetic testing once they are protected from discrimination on the basis of test results, we may be disappointed when people continue to avoid testing, to fortify their own denial, notwithstanding the legal shield. Many of us, in other words, may choose not to go to the Oracle of genetic information because we truly do not wish to "know ourselves" in all of our vulnerability. In that event, though GINA will have had the salutary effect of protecting people from an invidious (though financially quite rational) form of discrimination, it will not and perhaps cannot make us seek out the genetic information that could dash all of our hopes and dreams of invincibility.

Posted by Sherry Colb