Wednesday, November 25, 2009

The Genetic Information Nondiscrimination Act, our society and ourselves

I have been asked to comment on the enactment of the Genetic Information Nondiscrimination Act (GINA). Title II of this law came into effect a few days ago. 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.’

I do not feel particularly qualified to speak about its impact on insurance and workplaces, and whether this is truly going to make a positive difference in the lives of Americans. What I found interesting is that the process that led to the enactment of this piece of federal regulation was lengthy (13 years) and controversial, and that somehow the paradigm regarding genetic information has shifted. In the late 1990s, when the policy debate that led to GINA started, many commentators had been captured by the idea that genetic information were ‘exceptional’ in the sense that they carried along a great deal of predictability and significance. 13 years we know that we do not know much and that genetic data alone are a poor source of information (read the excellent chapter authored by Alex Capron in this book). In this regard, GINA is outdated because it reflects a view that is no longer widely shared.

On the other hand, it is certainly important to anticipate and correct possible forms of discrimination. Therefore, in that regard, GINA is still a useful tool. However, the real problem is that insurers and employers have incentives in piling up information about the genetic prospects of insured and employed individuals. People should not be worried about losing their insurance or employment because of who they are genetically (which certainly contributes to defining who we are only to a tiny little bit). The genetic lottery should not matter in defining who we are and how we can achieve our aspirations in life. This is also true for many other traits, many of which are the product of our choice—believing in God or not, having a certain partner, holding certain political ideas, and so forth.

If we need legislation to protect us against social arrangements (such as insurance or employment) that were set, sometimes in the past, to help us lead a better life, then we do have a problem. We ought to reason about the significance of the need to protect ourselves against our own social ‘creations,’ and reform the place that those ‘creations’ are occupying in our lives. It is a challenge that has been part of our civilization since the beginning. Genetic knowledge should not matter to define who we are.

Centuries ago, Terentius proclaimed that ‘Homo sum: nihil humani a me alienum puto’ (I am a human being and nothing human could be alien to me). This seems to be a good starting point to reason about GINA and what it means to us.


Leslie said...

This is an important contribution to the debate. It is necessary to have someone hold the torch against threats to reduce our employability and life chances to our genetic code. Thank you, Professor Boggio, for your continued efforts and work.

Leslie said...

On further thoughts, I find it very refreshing to see Professor Boggio holding up the firm belief in agency rather than structure, i.e. that we have a lot of choices in our lives and that genetic or other 'conditions' are, in this view, only a small, if any contributor to outcomes. I am not sure how widely this view is shared these days. I'd like to share this view as much as possible, but I do find that structural constraints may affect the opportunities individuals have to develop and aspire. Or are these just cages we build ourselves?

Anonymous said...

Hi Leslie,
for once, wiki is somewhat helpful on the agency / structure thing:

Andrea is just saying we have got choices and evil insurance companies shouldn't think we don't (have you ever watched 'minority report' on this issue?) BTW - Happy Thanksgiving!