Pioneering a new approach to bioethics

This article is part of the Provost's Project on Innovation series

One common experience among innovators is that sooner or later, they find themselves bumping up against the rules.

For Jeremy Sugarman, it happened early.

Bored in high school but fascinated by the practice of medicine, he trained to become an emergency medical technician (known as an EMT), noting with surprise that his young age was not necessarily a handicap. At 18 he was eagerly embracing the challenges of providing urgent medical care. He recalls vividly the night he went to a woman's house in response to a distress call. "I went into the house and looked to the left. There was blood on the stairway and blood in the sink. A woman in a nightgown was shouting, "He's in the back. He's in the back!" I went back to the bedroom; there was a night table full of medicine bottles, a man lying in the bed, and there was lots of blood on the sheets. I touched him and he was cold—one of the first dead people I'd ever seen. So I called out to the ambulance and said, "Go slow," because I knew at that point that there was no one to resuscitate."

Sugarman knew that the role of the EMT—to bring acutely ill patients safely to the hospital emergency department—no longer applied. But what should they do? What was the right thing to do in this situation? The rules dictated that they leave the dead man there in the house alone with his wife. They decided in the end to break the rules, place oxygen on the deceased man, and transport him as a patient to the hospital, never telling the woman that her husband had passed away. In retrospect, Sugarman, M.D., M.P.H., who is now the Harvey M. Meyerhoff Professor of Bioethics and Medicine, is convinced that he made the right decision, an opinion that luckily was seconded when his team arrived at the emergency room with a dead body. "When we got to the emergency room, I apologized to the emergency room physician. 'We're sorry about this, but he was there at home. His wife was alone and clearly thought there was something to be done. We weren't sure what we should do.' And he said, 'You did the right thing. I'm used to telling people about this and I can do it as well as it can be done. So thank you for taking care of him and her.'"

All these years later, Sugarman still thinks about the experience. Although they didn't obey protocol and broke the rules, he observes that with regard to their specific role in that situation, they were poorly equipped to discuss the death of the husband with his wife, something that the hospital staff was much better prepared to do. Even for a high school student, it seemed plainly wrong to just leave a dead man there alone with his wife in the wee hours of the morning. From experiences like this, Sugarman learned at an early age that determining right from wrong in a medical setting is rarely simple or straightforward. The rules will take you only so far. Sometimes going against what you are "supposed to do" is in fact the best option.

As a college student, Sugarman searched for whatever material he could find in bioethics, a field that was still in its infancy at the time. He was stunned by the fact that what little communication about bioethics he could find was frankly so dull. That discovery was driven home in 1982 when, during college, he helped raise $10,000 to host a three-day, university-wide symposium on bioethics at Duke, which attracted tremendous campus interest and brought to Durham some of the foremost thinkers in the field. "I was struck by a couple of things," he recalls of the experience. "First, that bioethics was of interest to most people across the university. And second, how stunningly boring some of these great scholars were when they spoke to the group. I remember thinking, "These issues cannot be this uninteresting, yet people can make it this boring.'" He knew he had to do something better.

Sugarman decided to pursue this line of questioning despite a general lack of understanding as well as outright disapproval from most of his advisors. He nonetheless prevailed and continued to develop the field of study during medical school, where the issues seemed increasingly pressing and relevant. "When there are multiple options, what is the appropriate course?" he wondered. "How can you best do medicine or engage in science in an appropriate fashion? I thought that clearly these were tough questions that somebody should know how to answer; somebody should know how to figure these out."

During medical school, Sugarman arranged to learn about not just medicine but also literature, medical history, and philosophy—the "queen of the sciences" as he likes to refer to it. He later earned master's degrees in philosophy and public health, so that he could internalize the language and approaches utilized by ethicists and health care experts as he tried to unite the fields. In doing so, he began to develop a model of how to approach ethical decision making in the arena of health care and medical science, a model that he expanded over the ensuing years as he became one of the preeminent bioethicists in the world.

Sugarman's innovative new model was tested and refined in the course of several major controversies, during which he played a critical role in helping to delineate the ethical principles at stake. Two notable examples were the harvesting of umbilical cord blood as a potential source of stem cells and maternal-fetal surgery, in which surgeons attempted to repair spina bifida in utero to minimize the detrimental effects of having an open spinal cord. Each of these thorny problems was approached systematically, using an approach grounded in basic ethical principles, studied empirically to gather relevant facts, and then pragmatically applied to the health care setting in which they existed. It called for collaboration among all the primary groups involved in order to derive consensus opinions and statements, many of which were published as high-profile papers. One issue even prompted JAMA to request "more words" for an article on umbilical cord blood banking, a rarity that Sugarman still laughs about today.

Perhaps it is the natural and inescapable consequence of his training as a physician, but Sugarman emphasizes that it is essential to approach bioethics from a practical perspective. "An important goal of doing bioethics well is to put the brakes on only when the brakes really need to be put on," he says. He is especially concerned that the brakes not be used as a way to hamper innovation but, instead, to protect innovation so that it can prosper safely and appropriately. "Good bioethics is associated with being involved with scientists who are comfortable exposing their science to ethical inquiry," Sugarman states. "It's going to happen sooner or later. We might as well get the ethics right from the beginning."