All In The Dna


The dean of the University of Maryland's School of Law says society should be working on ways to protect people from discrimination based on genetic information

Q&A -- Karen Rothenberg

February 04, 2007|By Michael Hill | Michael Hill,Sun Staff

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."

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