Kathy Hudson has quite a challenge. As director of the Center for Genetics and Public Policy at Johns Hopkins University, she not only has to lead all the work entailed in studying policy initiatives, but she has to convince people — primarily in genomics — that her work actually applies to them.
Hudson, who started out as a molecular biologist, found herself “more interested in reading the front pages of Science magazine than in reading the back pages. I was completely curious about how it was that lawmakers in Washington, DC, were able to make decisions that affected the course of science and technology.” She wound up working in Congress and the department of Health and Human Services for a few years. She spent the next seven years as assistant director at NHGRI.
But after the working draft of the human genome came out, Hudson sought a fresh project. She had become intrigued by policy debates about reproductive and genetic science and broached her area of interest to a director of the Pew Charitable Trust. She said, “Why don’t you write a grant to create a center and run it?” Hudson remembers. “We were eating dinner at the time and I dropped my fork.”
The center was fully functional by last September, when Hudson had rounded up her staff of 13 people, drawing on diverse scientific, clinical, and legal backgrounds.
A key tenet of the center is making sure “genetic information is used fairly and in a beneficial way,” says Hudson, 42. She expects a genetic discrimination bill to pass the Senate this year.
But the bulk of the center’s effort is going into the reproductive side of policy issues, such as prenatal testing and cloning. What thwarts her in her attempts to make inroads into genmics was summed up by a question she got after a recent speaking engagement, when a genomic scientist asserted that cloning had nothing to do with genomics. Her response: “You’re hairsplitting.”
Hudson’s reasoning is simple. “The promise of genomics in the human health arena has largely been described as the promise of more effective, new diagnostics, new therapeutics, and new preventive interventions,” she says. But she points out that despite some 900 genetic tests now available, there have been no interventions. The only immediate application of these tests, she says, is in reproductive choices — whether parents continue or terminate a pregnancy, for instance.
That’s why her crew is kicking off an effort to study scientists’ perceptions of the genetics debate, figure out how to get more people involved in talking about it, and come up with not a recommendation but a “set of options with really robust underlying explanations” for policy possibilities, she says.