Genetic testing and employment litigation.

• Position: Is There a Pink Slip in Your Genes? Genetic Discrimination in Employment and Health Insurance - Transcript

Thank you very much, and just as a preface, I really appreciate and am a bit humbled to be invited to this conference. I'm surrounded by such bright people and such committed people. It's just a great experience for me.

Most major policy problems have their own vocabulary of context, and this case that I was involved in is no exception. About 60 percent of current reported occupational illnesses are from repetitive motion injuries. It's such a huge problem in American industry that about 80 percent of these cases, which are general laydown kind of cases, are contested in Workers' Compensation or in Federal Employers' Liability Act settings. (2)

This fact is compounded by the fact that most major employers believe they have plenary power to conduct medical tests, obtain medical information and use that information without restraint, kind of a provocative statement, but if you think about it it's true.

I think you'll also find it's provocative but true that many people who act as occupational medical providers, health insurance administrators, treating medical providers and even geneticists do not know or even respect the privacy fights of individual workers.

There are a number of very surprising studies that talk about the absolute amenability of these healthcare providers to turn over information without authority. So when we go over those kinds of facts and in some cases partial assumption together, you end up in a context where bad things can happen to good people, and that's what the Burlington Northern Santa Fe (BNSF) case really was about.

You should be aware that the case started, I think, when Athena Diagnostics doing some very interesting advertising. Athena Diagnostics is owned by Elan Pharmaceuticals Company, the third biggest pharmaceutical company in the world. Elan has invested millions of dollars in preparing to engage in the sale of genetic testing products and the sale of arguably treatment for genetic-based diseases.

Athena, whose claim to genetic fame first was their home testing kit for Alzheimer's disease advertised by direct mail over the Internet and in magazines had tests to predict who would get carpal-tunnel syndrome. Their research was based on, believe it or not, scientific work done by Dr. Philip Chance. Phil Chance is a wonderful guy who has been inflicted by genetic disease himself and who, according to Dr. Chance,'s research, was totally perverted by the people at Elan Pharmaceutical.

Their advertising was on a website. You can look it up if you'd like to at http://www.athenadiagnostics.com, some wonderfully descriptive stuff where they talk about their pressure palsy neuropathy tests, and then they talked about it in very glowing terms. If you have carpal-tunnel syndrome, folks, we have the highest level of accuracy available in testing. Tests, of course, developed by Dr. Philip Chance and his colleagues, and they got a little picture, which I like to refer to as the genetic tarot card. It kind of looks like a little card, and it talks in scientific terms, but just enough that non-scientific people like occupational medical providers could understand, and they talk about, if you've got some of your workers who present with carpal-tunnel syndrome, that's an indication for testing.

Isn't this a wonderful test, and they give you all sorts of reasons why you should do this. Of course, these tests are wonderfully affordable, you know, somewhere between $1,000 or $3,000. They also engage in direct mailings, direct cold calls to corporations because they know that carpal-tunnel syndrome, repetitive injury stuff is a hot deal. There's a lot of money at stake.

Well, like all advertisers, sometimes the right person hears the right information. The Burlington Northern, like most of the nation's class one railroads, has a huge carpal-tunnel problem. They [cut] back on their maintenance forces by two-thirds and they're actually maintaining more track than they ever have because of their merger activity.

It's...