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Indiana State faculty member serves bioethics fellowship

October 21, 2015

A new Indiana State University professor is spending his first year as a faculty member tackling ethical issues in neonatal and pediatric care, thanks to a fellowship at Children's Mercy Hospital in Kansas City, Mo.

Three months into his one-year assignment, Michael Deem, assistant professor of philosophy and an affiliated faculty member with Indiana State's Center for Genomic Advocacy, said the experience has already been enlightening.

"The thing that has been most impactful is my experience walking through the (neonatal intensive care unit), learning about some of the conditions that these babies have and being around the families while physicians and other health care professionals are feverishly trying to find out what's wrong and what can be done to help these babies," Deem said.

It's easy to sit behind a desk and work through ethical problems, he said. "But ... the experience of actually seeing decisions being made in a very emotionally charged, stressful and rapid way has impressed upon me the need to tailor ethical approaches to specific contexts. It's not until you see the faces of the families and physicians that you begin to understand and appreciate the complexity of each individual case and realize that the sort of ‘one size fits all,' or robotic application of general principles to cases really doesn't make much of an impact in the real world of health care."

At Children's Mercy, Deem is working with the hospital's Center for Bioethics and Center for Pediatric Genomic Medicine on research funded by the National Institutes of Health to study genomic sequencing in children and disability issues.

"We chose Michael because he seemed to have the right combination of background in philosophy, focus on genetics and a particular interest in disability studies," said John Lantos, director of the hospital's Center for Bioethics. "One of the projects he is working on is to address some of the critiques that have arisen over the last few decades about genomic testing as it's been used in other clinical contexts, such as pre-natal screening, and then speculate about how those controversies might play out now that genomic sequencing is becoming more affordable and clinically practical."

Several disability rights advocates have raised concerns that implicit biases against disability have a harmful impact on the way health care professionals counsel families in light of positive diagnostic results from genetic testing.

Deem said one way health care professionals and bioethicsts can mitigate the negative effects of any such bias is by listening to the actual perspectives and reported experiences of members of the disability community and their families, and recognizing the ways in which some representatives of the medical community may have unwittingly devalued or disregarded the interests of disabled persons.

Because whole-genome sequencing holds the promise of identifying a large number of novel genetic variants and discovering many new gene-disease associations, the need for health care professionals and bioethicists to attend to the concerns of the disability community and reestablish relationships of trust is especially urgent, he said.

Deem said the hospital is looking at a novel tool known as STAT-Seq, a rapid whole genomic sequencing tool administered on acutely ill infants in newborn intensive care whose symptoms are not easily diagnosed via conventional methods.

"The trials are trying to determine whether STAT-Seq is effective for yielding faster diagnosis and improving health outcomes," he said. "If it turns out it will improve outcomes and possibly even lower costs, perhaps this will become more routine in the genetic workup of acutely ill (newborns)."

While completing his Ph.D. at the University of Notre Dame, Deem taught at Indiana University-South Bend and Ivy Tech Community College and developed a deep appreciation for public higher education in Indiana.

"Indiana State appealed to me not only because it would allow me to work in my area of specialization but also allowed me to continue to work in Indiana public higher education, which I believe in strongly," he said. "The student body has a reputation for being very talented and having diverse viewpoints, which benefits students and faculty alike, and it has a reputation for a high level of community engagement. That's exactly the kind of thing an ethicist wants to see - not just tossing around ideas in the classroom, but working with students who are eager to implement what they learn to the benefit of the community."

Upon completion of his fellowship, Deem will be teaching medical ethics and philosophy at Indiana State. He said the fellowship offers "a nice way of spending time on the ground working in the thick of the issues that I will be teaching about."

The fellowship at Children's Mercy is funded by the Claire Giannini Fund.

"The goal is to bring people in from outside of clinical genetics, people who have a background in law or philosophy or social science, and give them an opportunity to have a total immersion experience in a clinical setting," said Lantos. "They see what the doctors and parents are dealing with and come up with their own projects to identify issues and try to analyze them in a way that's going to be helpful to others who are facing the same dilemma."

Rusty Gonser, professor of biology and director of Indiana State's Center for Genomic Advocacy, called Deem's fellowship "a great opportunity for ISU to be involved with such a cutting-edge program. This will strengthen not only ISU's reputation, but that of The Center for Genomic Advocacy and the new Master of Science in Genetic Counseling."

Photo: http://www.smugmug.com/photos/i-pR5tfj9/0/X3/i-pR5tfj9-X3.jpg - Michael Deem, assistant professor of philosophy at Indiana State University and an affiliated faculty member with Indiana State's Center for Genomic Advocacy, stands next to a patient monitor in the newborn intensive care unit of Children's Mercy Hospital in Kansas City, Mo. Deem is serving a bioethics fellowship at the hospital. (Photo courtesy Children's Mercy Hospital)

Media contact and writer: Dave Taylor, media relations director, Office of Communications and Marketing, 812-237-3743 or dave.taylor@indsate.edu

 

 

Story Highlights

New Indiana State University professor Michael Deem is spending his first year as a faculty member tackling ethical issues in neonatal and pediatric care thanks to a fellowship at Chidren's Mercy Hospital in Kansas City, Mo.

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