Examining the Ethics of Systems Medicine
If a majority of the core values of Georgetown University Medical Center were personified, the result might look a lot like Kevin FitzGerald, SJ, PhD: teacher, researcher, ethicist, Catholic, and Jesuit.
In his fourth floor lab at the Research Building, white coat over his Jesuit collar, he studies genetic mutations that can lead to infant leukemias or those that result from some breast cancer therapies. In the classroom, the research associate professor and David Lauler Chair for Catholic Health Care Ethics delivers lively lectures.
And at the bedside, FitzGerald, a member of the ethics consultation service at GU Hospital, is care giver to the conscience, deftly counseling patients, their families, and their doctors and nurses on the thorniest questions of medical ethics.
Now FitzGerald, a fit, energetic man with a ready laugh, is taking on the challenging role of GUMC’s ethics of systems medicine chief.
Systems medicine – a personalized, preventative approach that considers genetic and environmental factors influencing an individual’s health in order to delay, mitigate, or treat active disease – is poised to shape the future of medical education, research and clinical care at GUMC. For FitzGerald, it boils down to two essential precepts: cura personalis, the Jesuit directive to take care of the whole person, body, mind, and soul, and, more colloquially, “the right treatment for the right person at the right time,” he says.
Yet the enormous, detailed amount of genetics data, which could be used to accurately predict future disease such as Alzheimer’s or Parkinson’s during childhood, raises myriad, confounding questions: How to protect patients’ privacy? Will health insurance companies claim that heredity is a “pre-existing” condition? When and how does a physician tell the parents of an infant that his systems medicine profile predicts that he’ll get leukemia at 12-years-old?
There are no easy answers, FitzGerald concedes, but the questions are fascinating and present opportunities for fundamental change and growth as a society. The first question asked most often during discussions of systems medicine involves patient privacy and the role of health insurance companies.
“Why do people insist on privacy and confidentiality? Lack of trust of insurance companies and employers,” FitzGerald says. “What if the pursuit (of the solution) allows us to develop a public policy that is less threatening?”
Perhaps, we as a society will revamp our values, FitzGerald reasons. For example, a handful of parents have opted to treat their shorter-than-average children with human growth hormone, an FDA-approved treatment that none-the-less raises ethical questions. Shortness is not a health risk but overly tall people are far more likely to have health problems.
“Why don’t we change society rather than label people as diseased?,” FitzGerald ventures. “Is the good to make sure there are no short people? Or is the good to have a society where height is simply seen as just another manifestation of the richness of humanity?”
For him, science is another joyful way to connect with God and other people and strive toward the good. “I like the way science and technology is upping the ante,” says FitzGerald, who recently concluded his tenure as a member of the U.S. Secretary of Health and Human Services’ Advisory Committee on Genetics, Health and Society (SACGHS). “These are really good questions and there are answers we have to choose. Life is kind of [about] living out the questions.”
By Victoria Churchville, Medical Center Advancement
