CMH Bioethics: Knowledge is Power? Parental Perspectives on Genomic Sequencing for Seriously Ill Children
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Despite the increasingly widespread use of genomic sequencing in the care of seriously ill children, little is known about how patients and families respond to this technology and the information it reveals. Results of a qualitative study designed to better understand the perspective of parents of children with cancer will be presented during this session. They describe the value and meaning that parents find in the use of genomic sequencing beyond any changes they may prompt in clinical care. Ethical questions about how this insight into parents’ perspectives should impact physicians’ recommendations about genomic sequencing, the informed consent process, and insurance coverage for such testing will also be explored.
Janet Malek, PhD is an associate professor of medicine and medical ethics at Baylor College of Medicine’s Center for Medical Ethics and Health Policy and the director of the Houston Methodist System Biomedical Ethics Program. In these roles, Dr. Malek conducts ethics consultation and other ethics activities throughout the Houston Methodist Hospital System, carries out research on the implementation of genomic sequencing into clinical practice, and designs and teaches ethics and professionalism programs for Baylor residents and medical students. She also serves as the Immediate Past Chair of the Board of Directors of the Academy for Professionalism in Health care. Her research focuses on ethical issues in pediatrics, genomics, reproduction, and professionalism education.