The Ethics Evangelist
By Martha Ross | scienceofcaring.ucsf.edu | February 6, 2013
As a young pediatric nurse in a Minnesota hospital in the early 1970s, Barbara Koenig became acquainted with the constellation of new technologies designed to save children’s lives.
Positive pressure ventilators, previously limited to operating rooms, were among the new innovations that became standard features of ICUs and neonatal intensive care units (NICUs). Some of Koenig’s patients in the NICU were premature infants with severe neurological damage or necrotizing enterocolitis. They couldn’t survive outside the hospital.
“There were long nights spent working desperately to keep a particular child alive, and the technology was so intense that it would take two of us to manage it,” says Koenig. The infant might be on dialysis or an ECMO (extracorporeal membrane oxygenation) machine, which provides respiratory and cardiac support to a severely damaged heart or lungs. Koenig and her colleagues also had to offer support to terrified parents.
“The imperative was to keep going, even when it was clear that these measures were not going to be successful,” Koenig says. “We had these constant struggles over whether we were doing the right thing.”
In the ensuing four decades, Koenig, who describes herself as a “professional worrier,” has worked at the forefront of ethical dilemmas in science, including those related to the sequencing of the human genome. Today she is an internationally renowned expert in bioethics, the study of controversial social and legal questions created by advances in biomedicine. She launched that career in the Bay Area by earning a PhD in the medical anthropology program offered jointly by UCSF and UC Berkeley.
Koenig pioneered the use of research-based social science methods and real-world practices to study questions surrounding end-of-life care, informed consent, cultural considerations in medical treatment, the biology of race and the ways genetic science can be used – or abused – in the name of improving health care for individuals.
Now she is back at UCSF as a professor in the School of Nursing’s Institute for Health & Aging. Her return follows leadership roles in bioethics at Stanford University and the Mayo Clinic. She has also published widely, lectured internationally and served as a faculty scholar for the Project on Death in America, funded by the Open Society Institute, and on national boards, such as a cabinet-level advisory panel on genetic testing in the Clinton administration.
Back at UCSF, she will continue her wide-ranging research while helping the university launch initiatives to strengthen ethical inquiries across its four professional schools. With Dan Dohan, a sociologist with UCSF’s Philip R. Lee Institute for Health Policy Studies, and Associate Vice Chancellor Elizabeth Boyd, she will also help develop ethical guidelines for a new biobanking project to obtain, process and share biological specimens at the five UC medical school campuses.
“I have such deep connections with the campus that it is a delight to be back,” Koenig says.
Sharon Kaufman, a professor at the Institute for Health & Aging and chair of the medical school’s Department of Anthropology, History and Social Medicine, helped engineer Koenig’s return to UCSF. The two were in graduate school together.
“Because of her innovative approach to thinking about the breadth of ethics in medical, scientific and social matters, and her extraordinary work, collaborative spirit and colleagueship – I urged her to return here,” Kaufman says.