Everything You Never Wanted to Know About Your Genes

A bill that would bar insurers and employers from discriminating against people whose genetic tests show they may be prone to cancer, Alzheimer’s, or other diseases has been stalled in Congress for years. Last week, the Genetic Information Nondiscrimination Act finally made it through the House and now must win Senate approval. President Bush has said that he will sign the bill, which prohibits insurers from denying coverage or raising rates for people whose genes suggest a predisposition to a disease or medical condition and prevents employers from basing hiring decisions on that information. 

To learn about the history and the promise of the act, BU Today spoke with George Annas, the Edward R. Utley Professor of Health Law, Bioethics, and Human Rights at the School of Public Health and chair of the SPH health law, bioethics, and human rights department.

BU Today: Could you give us some examples of the kind of genetic discrimination that the bill is designed to prevent?
Annas: It’s really hard to find cases where somebody actually hadn’t been given a job because they have a specific genetic condition. There’s one famous case in the literature, the Burlington Northern case. That was a railroad, and some of their secretaries were putting in claims for carpal tunnel syndrome. The railroad execs decided, well, maybe the carpal tunnel wasn’t caused by the work conditions there, but was genetically related, that these people had bad genes, and so they wanted to test all their employees, to contest the disability claims. And ultimately, somebody there blew the whistle, I think a nurse spouse of one of the people, and they went to the EEOC [U.S. Equal Employment Opportunity Commission] and they said that this was discrimination on the basis of genetics, and so the case was settled. It never was tried. But it was an example of how you could use genetics to discriminate — in this case, discriminate on the basis of worker compensation claims.

How do concerns about health insurance play into this?
For individual health insurance, which is almost prohibitively expensive anyway, private insurers could theoretically require genetic tests before they wrote the policy and could give you very high premiums on the basis that you have some genetic condition that was likely to lead you to have an expensive disease in the future. So those are the things people are worried about, and they’re worth worrying about, although as far as we know no health insurance company has ever done that.

Are you saying that the things the bill guards against are not a problem now?
Well, I’d say it’s not a big problem. But the question is, do you want to wait until it becomes a big problem?

This bill was first introduced in 1995. What took so long to get it through the House?
The original bill was one that we drafted here at BU, called the Genetic Privacy Act, and it was a much stricter bill. Here’s the story: part of the Human Genome Project was something called the Ethics Law and Social Policy subproject, and we were contracted by that project to write the bill. At the beginning of the genome project, a lot of the researchers thought they weren’t going to get people to cooperate in the research unless they could guarantee their privacy. So they wanted the genetic privacy bill. That first bill essentially said that you owned your own DNA and nobody could do any genetic testing of you without your informed consent, and if they did test you, they had to keep the information confidential and they had to destroy the DNA sample, etc. People initially supported that law, and then the researchers kind of freaked out about it, because they thought it would inhibit genetic research.

So the research community flip-flopped?
Yes. They asked for it. They wanted the bill to reassure patients, but then they thought ultimately that the privacy bill may not reassure patients, but might give them too much power. So it was really quite dramatic.

The insurance companies weren’t that happy with this. This was back in the mid 1990s, when most people involved in the genome project felt that once we had the genome, we were going to be able to predict lots of stuff. And maybe someday we will. But we’re not there yet. But the insurance companies felt, oh my god, if you can predict, here’s what’s going to happen: people are going to go and get their genome done, find out they only have 10 years to live, and then go and buy a billion-dollar policy. Well, of course the way to get around that was to limit the amount of money you could buy a policy for without a genetic test, for example, or answering questions about family history. And employers were worried that we were going to find out some stuff about your genetics that was going to show that you’re susceptible to x, y, z disease, and therefore if you work for us, you have a higher probability of getting that disease.

As a result of that, they backed off of genetic privacy, and said, let’s assume that everybody’s going to find this information out anyway, and let’s just do genetic discrimination. Let’s tell people that they shouldn’t worry about being tested because we are going to prohibit their insurance companies and their employers from discriminating against them on the basis of a genetic test. And that’s what this is. So this is the ultimate legislation. The bill has been so watered down. It doesn’t really do very much.

What should the bill do that it doesn’t do?
I don’t know if you’re familiar with the Catalona case from last year. This was a big-time genetics researcher at, I think, the University of Cincinnati. He was a prostate cancer researcher, and he collected tissue samples from about 10,000 prostate cancer patients to do genetic studies on them. And then he got into an argument with his university about who owned those things, and finally he decided he was going to go to Northwestern. When he moved, he wrote all his patients a letter saying, look, I’m going to Northwestern, you’ve donated your tissue to me, and I want you to sign a form saying I can take it with me. The University of Cincinnati sued him and said, no, it’s not yours, it’s our tissue, and we can do with it what we want. The genetic privacy law would have said, no, it’s the patient’s tissue. Anyway, it’s still on appeal. But the lower court sided with the university and said that under state law, this was a gift, and it was a gift to the university, not to the researcher, so the university could keep the tissue bank, and the patients had nothing to say about it.

That’s the kind of thing researchers worry about. Now, companies worry about some of the same issues. They worry about, what if they find a correlation in these genes and make a product out of it — do they own it or can the people who provided the tissue claim some ownership in it?

If the president signs the bill, what would be the immediate impact?
It’s not going to have any effect on the real world right now, because nobody’s doing the stuff that it prohibits. Nobody’s going to say, I’m not hiring you because of your genes. The question really is, what’s going to happen when you’re going to be able to do a $100 genome. And the question is, what dollar figure is so cheap that everybody — industry, and maybe medical schools or colleges —  is going to want your genome? And then it’s going to really matter.

I don’t know if you read about Jim Watson. This is too perfect. James Watson discovered the structure of DNA and is a giant booster of all things genetic. He wants genetic engineering; he wants to make designer babies, if we can ever do it. So a company told Watson that they’d do his genome for $1,000, and he said great, and then he called them back and said, wait a minute, just don’t do the section of the genome that codes for Alzheimer’s disease. I don’t know if it’s because he didn’t want to know or if he didn’t want anybody else to know. Genetic privacy is two things: one, things you don’t want to know yourself, and two, things you want to know but you want to make sure nobody else knows. That’s the best ad for genetic privacy. Mr. Genetics says no, there are some things better left unknown.

Chris Berdik can be reached at cberdik@bu.edu. Art Jahnke can be reached at jahnke@bu.edu.