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Life and Death and Law By Jennifer Baldino Bonett

Although his twenty-something classmates might wonder why a highly respected surgeon would go back to school, Steven E. Raper, MD, wouldn’t have it any other way. With case books stacked alongside his stethoscope and scalpel, Raper, a gastrointestinal surgeon at the University of Pennsylvania Health System, is studying for his JD at Penn Law.

It has been a full 25 years since Raper stepped into a classroom as a student. As associate professor of surgery at Penn’s School of Medicine, he is more accustomed to being on the other side of the whiteboard. But as he observed health care issues increasingly intersect with law and government — in the form of managed care, skyrocketing malpractice insurance, and increasingly rigorous billing requirements — Raper wanted to understand the overlaps from the inside out.

Then, as happens in both medicine and law, one case presented a defining moment. Raper had a long and successful history in basic science research and its potential applications in gastrointestinal maladies. In the 1990s, he was among the researchers seeing great promise in the nascent science of gene therapy, the insertion of normal DNA into cells to correct a genetic defect. In 1999, Raper was a lead researcher in a human gene therapy study for ornithine transcarbamylase (OTC) deficiency, a rare genetic, metabolic disorder that, if unchecked, can lead to death.

After years of meeting the biomedical research standards in animal testing, Penn researchers were ready to test gene therapy for OTC deficiency in humans. Raper’s experiment called for 18 adults to receive an infusion of the OTC gene. Jesse Gelsinger, an 18-year-old with a form of OTC, arrived in Philadelphia from his native Tucson to volunteer. Touring the city and taking photographs that would later ring with poignancy, Jesse Gelsinger raised his arms in triumph, Rocky-style, on the steps of the Philadelphia Museum of Art.

On September 13, 1999, he became the youngest patient in a gene therapy clinical trial, and at age 18, he was old enough to give written consent to participate. (Gelsinger’s father, who had custody of Jesse, publicly supported his son’s decision.)

At 10:30 a.m., Steven Raper injected Jesse Gelsinger with the substance expected to bring healthy OTC gene to his liver. That night, Gelsinger became nauseous and registered a fever of 104.5 degrees, as had other patients in the trial. By morning, Gelsinger had developed jaundice, a potentially life-threatening sign of liver malfunction. Complications mounted and, just over 24 hours after his injection, Jesse Gelsinger was in a coma. Despite extraordinary measures by Raper and his colleagues, Gelsinger went into multiple-organ failure and brain death. With the decision to remove the ventilator that had been breathing for the young man, Gelsinger died on September 17.

At 2:30 p.m. Raper articulated the most difficult words in the physician’s canon: He pronounced Jesse Gelsinger dead. At the same time, he made a promise: “Goodbye, Jesse,” he said. “We’ll figure this out.” At a moving memorial service for Jesse Gelsinger in his native Arizona, Raper helped scatter his patient’s ashes and read a poet’s elegy.

Although the official cause of death was adult respiratory distress syndrome, Gelsinger was the first patient whose death was related directly to gene therapy. A hailstorm of criticism from the scientific community, the government and the public quickly surrounded Raper and his colleagues. And then Jesse Gelsinger’s family filed a wrongful death suit against his doctors and Penn. The terms of the settlement, in 2000, were not released.

The experience deeply affected Steven Raper, a surgeon known by colleagues as sharp and compassionate, and he looked at his career through a new lens. In those dark days after Gelsinger’s death, Raper spent countless hours with Penn attorneys. “I gained a more intimate knowledge of lawyers and what they do,” he says. “I found them to be an incredibly bright group of people. Most doctors see lawyers in an adversarial role. The experience showed me the law profession in a new light.”

Raper is particularly interested in informed consent, a legal contract between the physician and the patient. The physician is required to share with the patient all relevant facts, risks, and alternatives of surgery and other invasive tests or treatments. Questions about the accuracy of the informed consent between Penn physicians and Jesse Gelsinger were a significant part of the wrongful death suit. Looking ahead, Raper sees informed consent as part of a legal curriculum that he hopes to introduce to medical education.

Bridging his surgical career at Penn Med with a legal education at Penn Law makes good sense to this physician, who fell in love with surgery as an operating room orderly in high school. Having performed operations for 35 years, Raper sought to entwine the physical and mental demands of surgery with the intellectual rigor of a legal education. He needed only to look across Penn’s campus. Drawn to Penn Law by the excellence in reputation, rankings and geographical proximity to Penn Med, Raper finds himself enthralled. He puts it in physician’s terms: “Medicine is the treatment of physical ills. Law is the treatment of moral ills.”

Looking back three decades to medical school in the 1970s, he recalls his education as “a single-person exercise,” he says. He is intrigued by the collaborative nature of contemporary legal education. Being quizzed by a senior physician as a freshly minted intern keeps new doctors on their toes. But that’s a bit of a cakewalk compared to being on the spot in the heat of a Socratic smackdown. “In medicine, there is a right answer you’re trying to get at,” explains Raper. “In the law, the professor can always turn the answer around. The issue isn’t you versus biology, but you versus human- made legislation.”

Yet the surgeon remains steady. “If I want to make changes in the way medicine is taught and practiced, I need to understand law and policy,” says Raper. (It also means using his skilled surgeon’s fingers to learn to keyboard class notes, 21st century-style, rather than write them longhand.)

With confidence and reflection that come from years of life experience, Raper has already ticked off his roster criminal law, civil procedure, property, torts and contracts, and he expects to fulfill his electives with courses reflecting his crossdisciplinary interests. On tap for the spring are constitutional criminal procedure and an independent study project on Sixth Amendment issues, an interest arising from an appellate brief assignment in his legal writing class. He has become something of a Supreme Court devotee, tuning in to CNN and downloading decisions.

While the American Bar Association does not track the number of physician-lawyers in the U.S., in 2002, the American Medical Association estimated up to 6,000 MD/JDs in the country. With 12 schools on one campus, Penn sets a standard for such interdisciplinary opportunities, and enables students like Steven Raper to take his study of the smallest common denominator of our existence — genes — and expand it outward with the potential to intellectually engage and change our society.

Award-winning journalist Jennifer Baldino Bonett was director of External Affairs for former Penn President Judith Rodin. She is now a freelance writer and editor specializing in higher education.