Science, society and the law — Ellen Wright Clayton has some issues

Science, society and the law — Ellen Wright Clayton has some issues

In the mid 1970s scientists and the government were at odds over new recombinant DNA research techniques and their unknown potential effect on public health. It was at ringside of this protracted controversy that Ellen Wright Clayton found her path.

She was studying at Stanford toward her master’s in biochemistry, and it happened that the professor teaching first-year graduate biochemistry was at the center of all the ruckus. Paul Berg didn’t discuss the public controversy much in class, yet it was all over the press. (Berg later won the Nobel Prize in chemistry for studies of the biochemistry of nucleic acids with particular regard to recombinant DNA).

“I just realized that where my heart was was the social response to science,” Clayton said.

And that, you say to yourself, sounds like an awfully messy and complicated area for a person to take on. Clayton appears, however, to have just the sort of universalist bent that her calling would demand.

As she neared graduation from high school in her native Houston, Texas, she looked for a college that was strong in both science and religion. “Even back then, I understood science as being situated in society and affecting people in real life,” she said. She chose Duke, where she majored in Zoology and sang in the choir on Sundays. Clayton later became both a lawyer and a pediatrician, and today she teaches in both the School of Medicine and the School of Law.

Introducing herself socially as a pediatrician and a law professor tends to be too much of a show-stopper, so at parties when someone asks what she does, she will usually say only that she is the director of the Center for Genetics and Health Policy at Vanderbilt (along with appointments in Law and Pediatrics, she is the Rosalind E. Franklin Professor of Genetics and Health Policy). Her work takes her into classrooms and patient rooms at Vanderbilt and Meharry, and to podiums and conference tables around the world. As a writer, educator, physician and policy expert, she’s engaged with many of the ethical, legal and social issues that crowd the way between health care and the greater society.

She established the Center for Genetics and Health Policy in 2001 to promote, says the mission statement, “interdisciplinary efforts to improve the use of genetic information and the delivery of health care.”

The advance of genetics is in part a preamble to a discussion about human society, a discussion that Clayton appears uniquely poised to help direct. Society and health care face a welter of questions. Are certain genetic variations grounds for employment discrimination? How might genetic variation affect an individual’s ability to learn and to fit into society, and should education take more genetic variations into account? Is genetic variation a criminal defense? Where do we draw the line on screening for heritable disorders in newborns? What constitutes a useful genetic test?

“The promise of genetics is enormous, it’s enormous,” she said. “But the overarching challenge is going to be recognition of the complexity of that information.” An awful lot of heat and not very much light is how she characterizes current public discussion of genetics.

“The juicy story is the story that’s scary on some level,” she said. To pull in readers, headline writers are prone to equate genes with fate — you knew, didn’t you, that your future was written in your genome. DNA is popularly characterized as the very book of life, when it’s more like the orthography of the contract for the unfinished screenplay of life.

Fantasists and commentators alike are wont to speculate about enhancement of human capacities through genetic engineering, while wild-eyed experts like evolutionary biologist Edward O. Wilson prophesy a day when the material sciences will sweep aside our philosophical and moral questions and dispel all doubt once and for all. Along with all the fiction that surrounds genetics, there is history to contend with: for better and for worse, the subject of genetics is connected with the eugenics movement and Nazi genocide.

All the clamor notwithstanding, Clayton finds that most of the issues raised by genetics are in fact longstanding debates cast in a new light, and that there are any number of established social, ethical and legal standards available to help sort through and focus the discussion.

As a writer, her initial foray into questions of genetics and society was a paper written in law school on liability in reproductive genetic counseling (the paper was published, winning her an invitation to join the law review). A little later, between law school at Yale and medical school at Harvard, she clerked for Judge John C. Godbold of the 5th U.S. Circuit Court of Appeals, spending much of her time on a case concerning frozen bull semen.

The judge had a thick Alabama accent, so the case wound up being all about “bull spoim.” The semen was used in the breeding of insect-resistant cows; a group of calves hadn’t thrived, so the Canadian semen seller was being sued, but the judge ultimately ruled that the “bull spoim” was not a defective product.

Clayton loved the work of helping a judge decide cases and controversies. “We’d come up with harebrained ideas and he’d say, ‘That can’t be the right answer,’ and tell us to go back and look further.” Godbold would not countenance the use of footnotes in legal opinions; Clayton says working for him taught her to focus the argument, tell a story, and be persuasive.

Pediatrician-in-training

At age 6, as part of an X-ray procedure called pneumoencephalogram, Clayton had to have the ventricles of her brain temporarily drained of cerebrospinal fluid and pumped full of air. The ordeal concluded, the first grader announced to her parents that she wanted to become a doctor. The toys her parents gave her suddenly all became doctor related.

As a young law clerk, Clayton had long ago set aside intentions of becoming a doctor when she was invited to present legal issues for grand rounds at the Medical College of Virginia.

On the trip to Virginia she had with her a legal brief that upon her return to Montgomery needed to be dropped off at Judge Godbold’s house; Clayton thought it over during the trip and as she handed the packet to the judge she announced that she was going to go to medical school. “I had decided if I was going to talk about the way law regulates medicine, I should learn more about medicine,” she said. “Attending medical school seemed the most efficient thing to do. Which is why I’m not an economist.”

Clayton is funny and personable and enthusiastic about her work. She wears her hair swept up and back, above almond-shaped wire-rim glasses. Her desk is cluttered with papers. An abstract tapestry and a large framed children’s drawing hang on opposite walls in her office in Light Hall. A small whimsical stuffed doll, a girl wearing a cape, rests atop the computer monitor.

Her professional travel schedule seems hectic, but she appears to thrive on all the varied, far-flung activity. In the three months concluding in June, for example, she will have traveled to Long Island, Philadelphia, Boston, and three times to Washington, D.C. She sits on boards or otherwise participates in committees and projects of the Institute of Medicine, the National Institutes of Health, the Food and Drug Administration, the American Bar Association, the American Society of Law, Medicine and Ethics (she’s a past president and past editor-in-chief of the society’s journal), and a long list of other organizations.

In honor of an Asian colleague of the center, on her windowsill Clayton displays two items of traditional Japanese ceramic art; they each bear a painted magic charm called a daruma, and Clayton explains that you color in the daruma’s right eye as you make a wish, and if your wish comes true you color in the left eye and keep the piece on display. But if your wish doesn’t come true, to ward off continued ill luck you’re supposed to destroy the piece. One of the darumas had its left eye colored in after her mother recovered from an illness. The other one, the center’s daruma, has one colored eye and one blank eye.

Texans in Nashville

Clayton was born in 1952, the eldest of three daughters. Her father was from Tennessee and attended law school at Southern Methodist University on his way to becoming a banking lawyer. Her mother, who now lives in Nashville, was raised in Houston and became a homemaker after studying sociology at Texas Christian University. Clayton’s grandmother lived just around the block and would quiz her grandkids’ knowledge of the Bible daily — this was in River Oaks, the Belle Meade of Houston, where the Wrights had moved from another suburb by the time Ellen reached junior-high age.

Popular encyclopedias sold for a dollar a volume at grocery stores in Houston, and as they began to assemble a set in installments, she and her sisters would fight over who would be first to read each new volume. “We read them until they fell apart,” she said. She was a Girl Scout until she finished high school, and by the time she joined the choir and the chorus at Duke she had already been singing for years in the Houston public schools and in her church choir.

This year, amid all her professional travel, Clayton is planning visits with her oldest son to prospective colleges. Jim, 17, was born in Madison, Wis., just weeks before his mom started her residency at the University of Wisconsin. At Jim’s birth a bag of dirt from his dad’s fifth-generation family ranch in Greenville, Texas, was placed beneath the delivery table, allowing the claim of birth on Lone Star soil.

“My obstetrician said, ‘That’s crazy,’ and I said, ‘That’s because you’re not a Texan,’” she said.

The Claytons came to work at Vanderbilt in 1988. Jay Clayton, whose fifth book will be published this year by Oxford University Press, teaches in the English department. The same bag of dirt was employed when their other child, John, 12, was born here in Nashville.

Asking the tough questions

“I only have an hour and a half, which is ridiculous,” she said. Introducing herself to a class of Vanderbilt graduate students, Clayton invites them to interrupt her lecture with their questions. “I’m easily distractible, which is a good thing, but I can also get back on task fairly readily.”

She leads the class through a rapid survey of the ethical, legal and social implications of genetics. Genetics is very powerful, she says toward the end of the session, “but it doesn’t determine what we should do as individuals or as a society. Whenever someone says, ‘The genetics are this so we should do this,’ we need to ask questions.”

“We need people like Ellen to raise questions,” said Dr. Jerry Hickson, associate dean for Clinical Affairs. “She’s engaged in helping all of us, members of society and the medical field, think about some of the ethical challenges that we face now and will face as we learn lots more about the potential of the new genetics. It takes someone of her intelligence and thoughtfulness to consider some of the challenges.”

“She has a great talent for focusing the discussion, cutting to the crux of it,” said Dr. John Phillips Jr., David T. Karzon Professor of Pediatrics and director of the division of Medical Genetics.

Among Clayton’s many concerns is the prospect that genetic variation may be misused to exclude people from employment or from other benefits of membership in society; and her corresponding concern is that, instead of sensibly relying on existing anti-discrimination laws, such as the Americans with Disabilities Act, governments may rush into new laws that create protected classes based on genetic variation alone, thus grossly unrecognizing the role of environmental factors in forging human identity and health.

She is concerned that, while genetics supports the view that distinctions of racial class are culturally driven, scattershot efforts by drug makers to develop new genetic therapies may wind up giving new life to the mistaken notion that racial categories have biological meaning.

She is concerned that doctors generally don’t have the background to sort through manufacturer claims about the growing number of unregulated genetic tests arriving on the market. This year Clayton established the School of Medicine’s first required course in genetics.

“She’s a good writer and a great public speaker; she mesmerizes audiences all over the world,” Jay Clayton said, “and she has also surprised herself by turning out to be a really good doctor.”

When she started medical school Clayton wasn’t sure if she would do a residency and go on to practice medicine, but it turned out that a residency would be needed to establish more firmly her credibility with policy questions. Jay mentioned that when she finally held and worked with a patient for the first time she was relieved that it felt natural to her.

“Ellen really does view the need of the whole patient,” Hickson said, “and we talk about that all the time, but she models that behavior. She is always advocating the well being of patients and families, not just physical well being but more broadly.”

Family First

The Claytons maintain a long-running disagreement about whether their first child was 5 weeks old (Jay’s recollection) or 7 weeks old (Ellen’s recollection) when his mother started her residency. “It was the greatest experience of my life,” said Jay of his time as a new father. He was by then a tenured professor at Wisconsin; he describes a summer spent with Jim cradled in one arm and a succession of books by philosopher and literary critic Jacques Derrida in his free hand. “It was a marvelous blend of emotional and physical closeness and intellectual abstraction,” he said.

“I crashed a date he had with another woman,” Clayton said, launching the story of how she and Jay met, a story told with the relish it deserves. Jay was dating one of the other associates at Vinson and Elkins, a top law firm in Houston where Ellen practiced law briefly after her clerkship. One day, having made plans with Ellen, this other attorney suddenly remembered she had a date with Jay. “She said, ‘Come along, you’ll like him.’”

Jay Clayton effected the change of counsel without difficulty: “I told my friend at Vinson and Elkins that he had gotten me a date with the wrong lawyer.”

Her reading at home consists of The New England Journal of Medicine, Science, Nature, The Journal of the American Medical Association, and occasionally The New Yorker. There are three entertainment TV shows that she’ll watch: “The West Wing,” “Law and Order” and “Everwood.” They subscribe to the symphony and the opera, and Ellen recently took a year of piano lessons. They run the kids to track events and choir practice. The Claytons are fans of Vanderbilt women’s tennis and Ellen has become a mentor to the players on the team.

When asked about her work with the Episcopal Task Force on Issues in Human Genetics, one of the slew of national and international organizations that have called on her expertise, she said, “I don’t think theologically,” adding that while basic bioethics tends to focus on autonomy, theological approaches focus more on responsibility. “It’s a different way of approaching decision making, also generative, and when it’s done the way I like it it can be an important counter…What I really like is getting new and different thoughtful perceptions on problems I’m thinking about. I like being stretched.” This leads back to her need as a student to find a college that was strong in both science and religion.

“I can’t claim to be such a synthesizer, but my own world view is framed now not only by ethics’ and religion’s part [in the social response to science], but also by sociology, politics, economics. It’s a multi-faceted view.”

The new genetics is coming. A lot could go wrong with its application in health care and with its interpretation by society and our legal system.

“Neither the science nor the policy questions are readily reducible to sound bites,” Clayton said. “What will help people is to be able to convey a sense of the complexity along with a sense of the tractability.” She said she is hopeful that a growing number of people are informed enough to begin asking the right questions.