Genetic testing can raise some dilemmas, especially when it comes to teens. For example, what if a patient turns 18 after starting genetic testing?
Esther E. Knapp, M.D., MBE, of Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine, is a board-certified pediatric hematologist/oncologist with specialized training in pediatric bone marrow transplantation.
According to Dr. Knapp, taking on challenges was part of the appeal of entering her specialized field.
“The truth is, I was impressed by doctors and teams who didn’t shy away from tense situations or even angry young patients,” she said. “It opened my eyes that pediatrics is not all butterflies and rainbows, but that was good. Sometimes taking care of critically ill children can be stressful for everyone involved, including families as well as the medical team. However, that moment when you reassure a scared parent and see the relief in their eyes can be very rewarding.”
Dr. Knapp joined Norton Children’s Cancer Institute in 2017. She sees patients in the Addison Jo Blair Cancer Care Center at Norton Children’s Hospital, plus at the outpatient clinic in the Novak Center for Children’s Health and at the Norton Children’s Infusion Center. She also is responsible for education of medical students, residents and fellows.
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She chairs the Ethics Committee at Norton Children’s Hospital and teaches a class on bioethics at the University of Louisville. She also has a master’s degree in bioethics. Her research has focused on ethical considerations in genetic testing, including the rapidly changing field of next-generation sequencing.
Dr. Knapp finds ethics compelling, explaining that genetic testing can raise some dilemmas, especially when it comes to teens. For example, what if a patient turns 18 after starting genetic testing? What information can they access and when? What happens when a teenager and their parents disagree on whether to undergo genetic testing, or what types of results they’d like to receive?
“As we know, teens and parents may differ in what they think or what they want to do,” Dr. Knapp said. “Teenagers often want to feel that their voice is being heard.”
Ultimately, Dr. Knapp believes one key question ethics can help answer is: “How can we do a better job talking with families and patients so we understand and meet their expectations?”