The Gordian Knot of Precision Medicine: Ethical Dilemmas and Psychosocial Impacts

Presentation Description:
Targeted drug therapies show promise for treating certain types of pediatric cancers. Yet, they also come with serious ethical and psychosocial implications that can have far-reaching impacts on patients, families and health professionals. Using a case-based approach with examples from Canada, Australia and the United States, this workshop will explore ethical and psychosocial implications of tumour sequencing, somatic and germline testing, and other aspects of precision medicine, and discuss potential strategies to address and mitigate them.

Conrad Fernandez, MD, FRCPC
Professor and Head, Pediatric Hematology/Oncology
IWK Health Centre
Senior Scientist, Beatrice Hunter Cancer Research Institute
Dalhousie University

Dr. Conrad Fernandez is Professor and Head of the Division of Pediatric Hematology Oncology at the IWK Health Centre and Dalhousie University. He is the founding Co-Chair of the Children’s Oncology Group (COG) Return of Research Results Committee and Vice Chair of the COG Bioethics Committee. He is the lead of the Ethics Node of the Terry Fox Research Institute PROFYLE Project. He is a member of the Panel on Research Ethics, which informs the research ethics policy of Canada, called the TriCouncil Policy Statement on Ethical Conduct for Research Involving Humans. He is a Senior Scientist and a Chair of the Research Committee for the Beatrice Hunter Cancer Research Institute at Dalhousie University. He is Chair of the COG Renal Tumors Committee and a member of the COG Voting Body Steering Committee.

Dr. Fernandez’s two research passions are the development of clinical trials for children with renal tumours and exploring the many ethical challenges encountered in considering the return of summary or individual research results to participants.

Steven Joffe, MD, MPH
University of Pennsylvania Perelman School of Medicine
Emanuel and Robert Hart Professor of Medical Ethics and Health Policy

Dr. Steven Joffe is the Emanuel and Robert Hart Professor of Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine. He serves as Chief of the Division of Medical Ethics and directs two post-doctoral fellowships in bioethics and in the ethical, legal and social implications of genomics. He is also Professor of Pediatrics at Children’s Hospital of Philadelphia.

Dr. Joffe attended Harvard College, received his MD from the University of California at San Francisco (UCSF), and received his MPH from UC Berkeley. He trained in pediatrics at UCSF and in hematology/oncology at the Dana-Farber Cancer Institute and Boston Children’s Hospital.

Dr. Joffe’s clinical work is in pediatric stem cell transplantation. His research addresses the ethical challenges that arise in the conduct of clinical and translational investigation. He has been principal investigator of National Institutes of Health, Patient-Centred Outcomes Research Institute (NIH, PCORI) and foundation-funded studies that examine the roles and responsibilities of principal investigators in multi-centre trials, governance in learning healthcare systems, return of genetic results to research participants, and the integration of genomic sequencing technologies into cancer care. He is a member of the U.S. FDA’s Pediatrics Ethics Subcommittee and of the National Human Genome Research Institute’s Genomics and Society Working Group.

Claire Wakefield, BPsych(hons), MPH, PhD
Director Behavioural Sciences Unit
Sydney Children’s Hospital

Professor Claire Wakefield, registered psychologist, is Director of the Behavioural Sciences Unit at Sydney Children’s Hospital, Australia. She is a chief investigator on grants worth >$26M and has published >140 peer-reviewed articles. Professor Wakefield holds a prestigious NHMRC Career Development Fellowship, and a $2.7M program grant, and is Co-Director of the SPHERE Kids to Adults (K2A): Creating Healthy Futures Clinical Academic Group. She chairs the pediatrics committee for the International Psycho-Oncology Society and founded the first international early career group for professionals working in pediatric psycho-oncology. Professor Wakefield’s team has created and implemented evidence-based resources for bereaved families, parents of children with cancer, and adolescents and young adults with cancer, including 10 clinical decision aids, many of which are now endorsed and disseminated by NSW Health. With increased use of genetic testing and personalized medicine in pediatrics, her team is assessing the psychological impact of new genetic technologies on children and families and is exploring the ethical questions arising in this novel area of medicine. Her team leads the patient-reported outcomes study in the PRISM clinical trial, one of the largest personalized medicine trials for childhood cancer patients worldwide.

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