ALL IN THE DNA

The Baltimore Sun

Karen Rothenberg says that almost as soon as scientists realized that they could map the human genome, there was also a realization that there were ethical and legal issues involved.

"Pretty early in the process, Congress started setting aside money to look at the ethical and social implications of the Human Genome Project," she says of the government agencies involved in the research over a decade ago.

Now dean of the University of Maryland's School of Law, Rothenberg has made something of a specialty of the intersection of medicine, science and the law.

She is the founding director of the school's Law and Health Care program and took a leave in 1995 to work at the National Institutes of Health in the Office of Research on Women's Health.

The way was paved for the ethical senstivities that arose about genetic research by the many questions raised by such scientific advances as test-tube babies and cloning.

Rothenberg says one of the first pieces of genetic research that brought these issues to her attention was the discovery of the high incidence of the genetic mutation associated with breast cancer in the Ashkenazi Jewish community while she was working at NIH.

"I have been studying these issues for the last 13 years," she says. "One of the biggest concerns from a public policy point of view is access to and misuse of genetic information."

Last week, she testified in Washington before a House subcommittee considering a bill designed to protect workers from discrimination on the basis of genetic information, from employers and insurers. If this 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. There will be more in the future. Indeed, some of the early work was on African-Americans for sickle cell and Jews for Tay-Sachs disease, two communities that have experience with discrimination. So we have to be careful. 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. 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.

Given these issues, is there really any reason to get this genetic information about yourself? Doesn't it 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. What about outside of the legal arena -- doesn't this information raise other issues?

Certainly. What if you have a genetic test that that may show a predisposition to breast cancer? When do you tell your boyfriend? On your first date? When you get engaged? When you get married? How about your children? Your parents? Those are the kinds of questions we need to start asking about the impact of genetic information on social relationships.

But we do have a love affair with genetic information. Look at all the people going free as a result of DNA testing. People think that looking at genes is great science that can do great things in the law.

What is very important to emphasize that the DNA information that can free the innocent or identify the guilty or establish paternity is very different that the DNA that is predictive of certain diseases, conditions or traits. In the end, can we pass laws to address all of these problems?

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.

michael.hill@baltsun.com

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