A bioethics pioneer recalls the birth of a discipline

In the early 1960s, a man in his 60s was admitted to what was then Grace-New Haven Hospital. Norman Fost, MD ’64, was a medical student on rotation.

The patient was critically ill. He’d suffered a massive stroke on top of preexisting diabetes, liver failure from alcohol use, and multi-organ system failure. The stroke left him permanently comatose. Medical team members couldn’t identify anyone who knew the patient.

The medical team thought it was unlikely the patient would survive hospitalization. And if he did, Fost noted, he’d probably spend the rest of his life in a nursing home, unaware of his surroundings. Only health care practitioners would know he was there. He asked the senior resident why they were continuing treatment.

“There was this stunned silence,” Fost recalled. “People just ignored my question and went back to discussing the fluids and the electrolytes.”

After rounds, Fost remembers his senior resident walking up, and putting his arm around him. “That was a fascinating question, but it was inappropriate to raise on rounds,” Fost recalls the older physician saying. Instead, he encouraged Fost to ask such questions in the residents’ workroom or the cafeteria. “I immediately realized that there was a huge ecologic niche for a career,” said Fost. “If no one else wanted to talk about these issues, there could be no competition and I could become the expert!”

In 1973, less than 10 years after graduating from Yale School of Medicine, Fost founded the University of Wisconsin’s Program in Medical Ethics. He is a professor emeritus of pediatrics and bioethics and has served on numerous federal committees focused on ethical and regulatory issues, including President Clinton’s health care task force in the 1990s.

Today, ethics is a staple of medical education. There are more than 30 graduate programs in bioethics across the country, and nearly all U.S. hospitals have ethics committees. But when Fost arrived in New Haven in the 1960s, he recalls there being “zero opportunity for anything resembling bioethics.”

As a biology major at Princeton, Fost developed an interest in philosophy and religion studying under Paul Ramsey, PhD, an early bioethics scholar and himself a graduate of Yale. Fost carried his interest into medical school, and in the absence of formal courses, he and several other students formed a special interest group devoted to ethics.

Meanwhile, Fost began spending time at the Yale Law School. Friends there often called him to testify as an “expert witness” in moot court competitions where students practiced trying medical malpractice cases. In his senior year, Fost took an elective seminar on ethical issues in psychiatry taught by the late Jay Katz, MD, a psychiatrist and law professor at Yale.

Fost found the material riveting. He remembers one case in particular — a U.S. State Department insider who was selling nuclear secrets to the Russians had come to Katz to talk through his guilt. Katz was faced with the decision of whether to break his client’s confidentiality and blow the whistle on his espionage.

When the course was over, Fost told Katz that he was inspired by his example and wanted to forge a similar career but with pediatrics as his specialty, not psychiatry. “I remember vividly him saying, ‘that won’t work because there are no interesting ethical-legal issues in pediatrics,” Fost said.

Fost would remind his mentor of that advice many times throughout his career, he recalls with a laugh. But he couldn’t be swayed. His father was a pediatrician, and Fost had spent much of his childhood accompanying him on house calls.

After graduation, Fost followed Yale alumnus Robert E. Cooke, MD, to Johns Hopkins. Cooke, who was chair of pediatrics at the hospital, was sympathetic to Fost’s interest in bioethics. He had two daughters with Cri-du-chat syndrome, a rare genetic disorder marked by developmental difficulties, and advocated for children with disabilities. Still, Cooke suggested keeping bioethics as a hobby and focusing on a more established speciality. Fost settled on clinical pharmacology.

In the months that followed, another patient changed the course of Fost’s career. A child arrived in the hospital with duodenal atresia, a relatively common intestinal obstruction in children with Down syndrome. It can be fixed with surgery but is fatal if left untreated. The parents refused the operation, not wanting to raise a child with a developmental disability. The child died of dehydration in 15 days.

Cooke relayed the story to his friends Eunice Kennedy Shriver and Sargent Shriver, and the couple suggested making a movie about it. The film, called Who Should Survive, premiered at the newly opened John F. Kennedy Center for the Performing Arts in 1971. The interest generated by the film persuaded the Kennedys to launch three bioethics programs, including one at Harvard University. Set to begin studying clinical pharmacology, Fost instead accepted a fellowship at Harvard.

For Fost, the journey has been a memorable one. “I had the dumb luck to just be starting out my career right at the dawn of this era of bioethics,” Fost said. “It was a fantasy coming true.”