Year of the Humanities Profile: A Philosopher of Bioethics

An 8-year-old girl suffers from seizures—dozens every week—and her desperate mother brings the child to a top neurologist. The mother agrees with the doctor’s suggestion to have genetic testing done, looking for a genetic cause that would enable her doctors to tailor the treatment.

But instead of genetic links to the seizures, the lab discovers an “incidental finding,” a genetic mutation predisposing the child to breast cancer, a trait that could have been passed down from the mother or father. 

And the father’s test doesn’t reveal a mutation for cancer, but instead it shows something much more shocking—he isn’t the girl’s genetic father. It’s a secret that could shake the foundation of the family. How should it be handled?

Lisa Suzanne Parker weighs such possible scenarios as she researches the real-world dilemmas of bioethics along with her colleagues in the University’s Center for Bioethics and Health Law.

As associate professor of human genetics at the University of Pittsburgh’s Graduate School of Public Health—the first bioethicist appointed in a genetics department in the country—Parker wades into thorny modern issues at a time when genetic testing, gene manipulation, and other issues have created headlines and new boundaries.

To Parker, the questions of bioethics are solidly rooted in the humanities. In fact, she is a philosopher who applies the tools of her discipline to medical research and treatment.

“We help investigators to recognize the questions that can’t be answered by data,” Parker said. 

She added that the study of humanities, especially philosophy, “develops skills to clarify values, ask questions, identify what is at stake,” and help investigators decide whether a matter should be an individual decision or a matter of policy.

As Pitt celebrates this academic year’s Year of the Humanities in the University, it’s useful to see how a range of people from diverse fields draws from the humanities in their work.

Parker serves on the steering committee for this year’s celebration of the Year of the Humanities. Joining her are faculty in fields ranging from pharmacy, law, business, engineering, physics, and political science, as well as colleagues from English literature, music, and other humanities departments. 

Her research focuses on ethical issues regarding the privacy of genetic information and the way that genetic information can change how people perceive themselves. For example, if a young man finds out he has a genetic predisposition to Alzheimer’s disease or Parkinson’s, does that cause undue anxiety and alter his feeling of wellness? Should he have access to that medical information?

Parker also provides researchers with ethical guidance on the design of their studies, including compensation of subjects.

In one scenario, a research subject has blood drawn three times over a six-month period. Parker advises researchers to pay after each blood draw, instead of waiting to pay the subject at the end. That way, the subject who would rather drop out of the study won’t hold out to the end just to receive the payment. 

Parker doesn’t talk directly to patients. Instead, her role is to help frame the questions that genetic counselors and their patients may consider.

For example, what happens if one sibling wants to do testing to reveal her genetics-related risk of disease, while her brothers and sisters don’t want to know?

Parker helps to shape the national debate on such issues. She chairs the Genomics and Society Working Group that identifies emerging ethical issues and advises the National Human Genome Research Institute, which is part of the National Institutes of Health. She also serves on NIH working groups that develop policy recommendations on the management of research results and incidental findings.

Parker enjoys working on such ethical issues out in the world as opposed to the more solitary study of philosophy. As a college student, she was drawn to philosophy because of its rigor and intellectual stimulation. She excelled in the field and received  a PhD in philosophy through Pitt’s acclaimed program.

“Studying philosophy has given me a finer instrument for making decisions, rather than making blunt decisions.”

Reading literature and watching plays also encourage medical professionals to develop more empathy for their patients and helps them to ask more sensitive questions that go beyond mere symptoms, she said. While a physician with a comfortable life may not undergo pain, poverty, or addiction, studying the arts can help the doctor understand the experiences of the patient, Parker said. A great work of fiction or a moving play can help clinicians understand a patient better so they “don’t jump to the conclusion of test results.” 

In addition to directing the University’s Master of Arts Program in Bioethics, she passes on her passion for bioethics to medical students, some of whom earn a concentration in humanities, ethics, and palliative care. “I am excited by the number of students who are interested in integrating ethics and humanities into science,” she says.