Genetic discrimination: does it exist, and what are its implications?

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Yes. Once again, I stand between you and food and drink. I don't want to take up too much of your time, because you've heard a lot about what I had to say, but I was just reminded from Dr. Wiesner of a story. I was visiting my brother, my younger brother, and his young son came to him, to his father and to his uncle, and be happened to have gotten a poor report card that quarter, and he comes to his dad and his uncle and he says, "Father, I need you to sign this report card this quarter, but I have to tell you, I got some bad grades." And so my brother, Danny, says, "In our family, we really value education and this is really important." My brother begins to give his son a fatherly speech. Elan, his son, says, "Wait a second, father, I only have one question for you. "Do you think that my bad report card is a product of genetics or the environment?" I think that's really sort of where people are at in trying to sort through these issues.

This panel is Genetic Discrimination: Does It Exist, and What are its Implications? I just want to share with you some thoughts about that based upon all of the comments, each of which comes at this in a little bit of a different way.

Does genetic discrimination exist? Thus far, there have been no cases other than Burlington Northern (2) and maybe a couple of other cases which have been filed by plaintiffs in either federal or state court. Notwithstanding all of the statutes, there haven't been a tremendous amount of charges coming in, people coming to the EEOC [Equal Employment Opportunity Commission], or to respective state agencies and even filing charges. This fact confuses me, because I actually believe that genetic discrimination, as we've been talking about it, is happening more often in the real world than this charge flow would indicate.

I have spent a lot of time in the past year talking to the directors of state human rights commissions, and EEOC staff in our field, and I'm trying to understand why. I don't have any particular answers, but here are some thoughts that I do have.

One is that this is really new stuff. This is cutting edge technology and it may be that people aren't quite engaging in genetic testing, the kind of Athena Diagnostics genetic testing that we've been talking about. The second issue at play is that there may be people who are coming to plaintiffs' attorneys and saying, "Here's my story and here's what happened to me," and plaintiffs' attorneys, either because of a lack of understanding, a lack of the financial incentives in bringing a case, and the Supreme Court and the other federal courts consistent narrowing of the Americans with Disabilities Act, the plaintiffs' bar is basically rejecting these cases and just refusing to take them, because either there's no money or they don't think that they're winners because of the definitional problem.

I also think that there's a lack of knowledge out there by workers. Again, I mean, the Burlington Northern case is an exception on a number of different levels, but very rarely, if ever, does a company, I believe, come up to a worker and say, "Oh, by the way, here's what we're going to do, we're going to do some genetic testing on you and try to figure out what kind of whacky markers you have for all sorts of nefarious reasons."

People don't generally tell you whether they're doing genetic testing, I believe. Therefore, workers generally don't know that it is an issue or relevant or at the root of why they didn't get the promotion or why they weren't hired or why they were denied under the terms and conditions of employment.

So I think a number of those things are going on to figure out whether this exists or not. There is some subjective, anecdotal and objective data that's been done. None of that data is perfect, and I think it's certainly an area where new statistical data is really required to try to understand the nature of the problem out there.

The Genetic Alliance, which is a consortium of consumer-based genetic disability groups, has done or is in the process of doing a very, very extensive study on the nature of genetic discrimination in both employment and in insurance. People are anxiously awaiting the report of that study, and if you go to its website, which is http://www.geneticalliance.org, we may be able to get some bits and pieces about that to get a piece of it.

One comment I wanted to make with respect to something that Professor Davis said, and that had come up in an earlier set of remarks, is this concern about people, particularly in the insurance industry, finding out that they've got these genetic markers and stocking up on insurance to stack the deck in response to a bad genetic marker.

There's absolutely no evidence that it occurs out there, that it is the reaction. In fact, much of the evidence seems to point the...