Ways to protect people from discrimination based on genetic information

Michael Hill, in a recently released story in the Baltimore Sun, provides a series of questions and answers about genetic discrimination. The answers come from Karen Rothenberg, dean of the University of Maryland's School of Law and founding director of the school's Law and Health Care program. Last week, she testified in Washington before a House subcommittee considering a bill designed to protect workers from discrimination by employers and insurers on the basis of genetic information.

Here are some of the questions and her answers:

If potential discrimination has been an issue for such a long time, why is it just getting written into a federal law?

Early on, I was part of a series of working groups that put together a framework for a legislative approach to the issue because I had researched early state legislative approaches. When it appeared that we were not going to get it through initially on the federal level, we adopted a two-stage approach -- state-by-state efforts and continuing work on the federal level -- going back as early as 1995. Maryland is one of a number of states that took action on this, though it is impossible for any single state to cover all the issues.

In Washington, on and off, we have made some progress. We would get something watered down through the Senate and not through the House. It looks possible that this year something could happen.

As a matter of social policy, this issue is extremely important. What we are saying is that we should not allow discrimination because somebody gets genetic information that tells them that something in their genetic code says they have a predisposition to heart disease or cancer or whatever.

I think what we as a society have to say is, "Look, we all have a number of mutations in our genetic makeup that predispose us to diseases or conditions."

The people and the genetic predictors that get singled out are the ones that researchers happen to have looked at. . . We should not discriminate against somebody because we have identified some predictor in their genetic code. That is important in every state, and it is important nationwide.

Why would people want to get genetic information about themselves if they are worried about discrimination? Doesn't testing usually just tell you something you can't do anything about?

Remember, there is a wide range of genetic information. Some can paralyze you and there is nothing you can do about it. But others can mean you can make a change in your lifestyle or medical choices.

Let's say a disease, colon cancer, has already been diagnosed, then, for example, a genetic test might say something about what sort of treatment you should get, what kind of drugs, whether it should be chemotherapy or radiation or radical surgery. At that point, you may make a risk/benefit analysis, weighing privacy and discrimination concerns against medical decisions.

What you have to remember is that most people who get colon cancer do not have a genetic explanation, at least at this point. Then there are people in the same family, and one gets it and the other doesn't. They grew up in same environment, ate the same food, breathed the same air and for some reason one gets sick and the other doesn't. They may or may not have the genetic predisposition. Even if someone does have that predisposition, it interacts with the environment in a way that we do not understand. So it really makes no sense to use these genetic markers for employment or insurance or any other reason like that. Even if we knew for sure, this is a civil rights issue. People should not fear discrimination based on their genetic code.

Then there is the impact on the future of genetic research. People should not be afraid to participate in big clinical trials that can advance our knowledge of dealing with diseases, afraid that the information the researchers find out about them can be used against them. Some people will want their individual results if available, some will not. Again it is a risk/benefit analysis, deciding if the results are of value to them. But what will they do the next time they are filling out a form that asks about medical tests? Does this include genetic information? When you don't get the results, you don't have any of those issues.

My bottom line is that if we as a society choose to invest in this research, it should not be to penalize or hurt people; it should be to empower them.

In the end, can we pass laws to address all of these problems? Is it really possible to legislate such discrimination out of existence?

You can never guarantee legislation will eliminate hate or fear, but we can try. This is particularly important post-9/11 when the government is looking into so many aspects of people's private lives. What I worry about is that your genetic code, as opposed to your race or your gender, is invisible. If you make a claim of discrimination based on race or gender, you are not revealing any secrets. But that might be the case for a healthy person who is claiming discrimination because of some genetic predisposition. So they risk their loss of privacy and, unless they are protected, they have no discrimination claim.

It is one thing, as we have done in many states, to tell insurance companies that they cannot discriminate, cannot refuse to issue policies, based on genetic information. But the fact is that in our society, most insurance comes through employers. So if an employer denies you a job because of what that company knows about your DNA, it is in effect denying you insurance.

And remember, many of these employers are self-insured so they are essentially directly denying you the insurance they underwrite.

One thing you have to realize is that there are ways for employers to get such information that legislation will never deal with. An interviewer doesn't have to ask if you have a lot of breast cancer in your family. Say I call a reference you give me and that reference says, "She's a fantastic worker, such a hard worker that she never missed a beat even over the last few years when three or four members of her family got breast cancer."

There is not going to be anything illegal about that. But try proving discrimination if you don't get the job. It will be difficult.

I don't think any legislation can do all that. But legislation can send a strong message about social policy. People should be respected for who they are, not denigrated because of some difference in their genetic makeup.

The full article is available at http://www.baltimoresun.com/


Marie Godfrey, PhD

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