This is an application for a K01 award for Dr. Danton Char. This K01 will provide the support for him to acquire the necessary training, practical experience and knowledge to become an independent clinical investigator in the ethical, legal and social implications surrounding the implementation of genetics/genomics to the clinical care of critically ill infants and children in the perioperative environment, particularly the ELSI issus that relate to the care of children with complex heart disease (CHD). Within the time period of this award, his goal is to capitalize on the knowledge he's gained from his clinical training as a pediatric cardiac anesthesiologist and his training in clinical research to reposition himself as a ELSI researcher for this fragile patient population. To achieve this goal, Dr. Char will use this award to obtain training and competence in qualitative research methods, genetics and bioethics and to gain mentored experience in developing and implementing an independent ELSI research project. He has assembled a mentoring team comprised of a primary mentor, Dr. Mildred Cho, who is the Principal Investigator at Stanford's Center for Integration of Research on Genetics and Ethics; a co-mentor, Dr. David Magnus, Director of Stanford's center for bioethics; and two additional advisors, Dr. Sandra Lee, an anthropologist who conducts research on the integration of genomics into medicine and Dr. Euan Ashley, Director of Stanford's Center for Inherited Cardiovascular Disease, who's research is focused on the interpretation of whole genome sequencing to improve the diagnosis of cardiovascular diseases. We have virtually no knowledge about how clinical genomics will affect critical care. Using both qualitative and quantitative approaches to assess clinician and parent attitudes on the potential impact of whole genome sequencing (WGS) on the care of critically ill children with CHD, this project proposes to pursue 3 aims: (1) How clinicians caring for critically ill children with CHD anticipate/perceive the impact of WGS on care choices; (2) How the perception of WGS by parents/caregivers of critically ill children with CHD is affected by different potential clinical uses of WGS in these children; (3) To observe directly ELSI issues that emerge with the pilot implementation of WGS to the care of critically ill children with CHD.

Public Health Relevance

Being able to anticipate and understand the potential ELSI issues involved in the incorporation of the knowledge derived from WGS on the bedside care of individual critically ill children with CHD will help guide both areas for further research as wellas areas for needed ELSI intervention as WGS is implemented in the care of these fragile children.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Scientist Development Award - Research & Training (K01)
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Special Emphasis Panel (ZRG1)
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Boyer, Joy
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Stanford University
Schools of Medicine
United States
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Char, Danton S; Lee, Sandra Soo-Jin; Magnus, David et al. (2018) Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically ill children with heart disease. Genet Med 20:1455-1461
Char, Danton S; Shah, Nigam H; Magnus, David (2018) Implementing Machine Learning in Health Care - Addressing Ethical Challenges. N Engl J Med 378:981-983
Char, Danton S; Lázaro-Muñoz, Gabriel; Barnes, Aliessa et al. (2017) Genomic Contraindications for Heart Transplantation. Pediatrics 139:
Char, Danton (2017) The Advance of Rescue Technologies and the Border of Viability. Am J Bioeth 17:40-41