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

Posted on September 19, 2019 by Jamie Irvine


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.

Speakers:
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.

Posted in 2018 Symposium, Education for Health Professionals | Tagged 2018 symposium, ethics, psychosocial

2018 POGO Symposium on Childhood Cancer

Posted on November 22, 2018 by Jamie Irvine


The 2018 POGO Multi-Disciplinary Symposium on Childhood Cancer – Precision Medicine in Pediatric Oncology – examined clinical and scientific advances in precision medicine and explored how those advances are impacting the diagnosis and treatment of cancer in children.

Over 250 delegates representing a variety of disciplines attended the conference.

VIEW THE PROGRAM

Click on the session titles below to view presentations that POGO has permission to share. 

PLENARY SESSIONS

Precision Medicine in the Pediatric Oncology Clinic: From Feasibility to Clinical Impact
Katherine Janeway, MDMD, MMSc

Precision Medicine – A Paradigm Shift?
Ian F. Tannock, CM, MD, PhD, DSc
Uri Tabori, MD

Thinking Practically: Delivery of Care Considerations for New Agents
Karen Fung, MSW, RSW
Tara McKeown, RN MN NP-Paediatrics

Ethics and Consent in the Age of Precision Medicine – Forging a Path Forward
Steven Joffe, MD, MPH

Select Poster Presentations
Alexandra Zorzi, MD, FRCPC
Andrew Shuen, PhD Candidate, MD, FRCPC
Lauren Mulrooney
, Nursing Student (3rd year)
Valli Subasri, MSc candidate (Medical Biophysics)
Nicole Espinosa, BScH Candidate (Life Sciences)
Mohammad R. Alqudimat, PhD Student (Nursing)
Marta Wilejto, Assistant Professor Paediatric Hematology/Oncology
Sarah Naraine, Fourth Year Nursing Student
Ceilidh Eaton Russell, PhD
Jill Furzer, PhD candidate (health economics)

Targeted and Traditional Agents: Can We Reduce Side Effects Using Pharmacogenomic and Endogenous Biomarkers?
Richard B. Kim, MD, FRCPC

The Future of Immunotherapy, CAR-T and Beyond
Shannon L. Maude, MD, PhD

WORKSHOPS

The Evolution of Clinical Trials in Canada
Rebecca Deyell, MD, MSc, FRCPC
Josh Silvertown, PhD, MBA, MSM
Patrick Sullivan

PROFYLE/KiCS: The ABCs of Precision Medicine in Canada
Alexandra Zorzi, MD
Anita Villani, MD, MSc, FRCPC
Andrea Cote, RN, BScN

CAR-T Cell Therapy in Ontario: Opportunities and Challenges
Joerg Krueger, MD
Stacey Marjerrison, MD, MSc, FRCPC
Colleen Callahan, RN, MSN, CRN

Posted in 2018 Symposium, Education for Health Professionals | Tagged 2018 symposium, CAR-T, Clinical Trials, consent, diagnos, ethics, genetics, pharmacology, precision therapy, psychosocial, side effects

Interactive Group Discussion – Looking Through the “Retrospectoscope”: Discussing the Burden of Curing

Posted on March 6, 2014 by admin

Presentation Description:
Treating survivors with profound and devastating late effects is a sobering and sometimes guilt-inducing experience. We can ‘cure’, but at what cost? This interactive group discussion, moderated by Jonathan Hellmann, Neonatologist and Ethicist at SickKids in Toronto, explored the burden of curing and the ambiguity that pediatric oncology professionals delivering survivor care may face when re-examining treatment decisions made years ago, and their consequences. Three vignettes were presented to kick-start the discussion.

Moderator:

Jonathan Hellmann, MBBCh, FCP, FRCPC
Clinical Director, Neonatal Intensive Care Unit
Hospital for Sick Children, Toronto

Posted in 2014 AfterCare Education Day, Education for Health Professionals | Tagged 2014 AfterCare Education Day, brain tumor survivors, childhood cancer survivors, ethics

Facebook, Twitter, Tumblr…and Cancer – Social Media in Pediatric Oncology

Posted on March 4, 2014 by admin

Presentation Description: The advent of social media has prompted a major shift in the clinician-patient relationship. The opportunities for patients and their family members to engage with health care providers using social networking sites hold the promise of enhancing communication, strengthening the therapeutic alliance, and bolstering patient satisfaction. Indeed, some would argue that clinicians have an ethical obligation to interact with their patients in the electronic space and we now have numerous examples of providers who have succeeded in doing so. On the other hand, clinicians’ increasing use of social media and their interactions with patients in that setting can yield new ethical dilemmas. The potential for lapses in medical professionalism has led some to adopt very restrictive policies which would limit or even prevent clinicians from communicating with patients using social media.

This presentation elucidated both the promise and the pitfalls of integrating social media into the clinician-patient relationship. Unique considerations relevant to both cancer care and pediatric practice were reviewed. Moreover, we considered how to educate clinicians and develop ethically sound policy to allow for optimal interactions with patients using social media.

Speaker:

Jennifer Kesselheim, MD, MBE, EdM
Pediatric Oncologist
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
Arnold P. Gold Foundation Assistant Professor of Pediatrics
Harvard Medical School, Boston

Posted in 2013 Symposium - Innovation in Pediatric Oncology, Education for Health Professionals | Tagged 2013 Symposium, ethics, patient care, social media

POGO Programs Update – From Innovation to Application

Posted on March 4, 2014 by admin

Presentation Description: The umbrella that POGO provides to ensure the equity of care for children with cancer across the province encompasses a wide range of programs and activities. These commonly engage numerous stakeholders in the hospitals, other institutions, government and the community. While it is not possible to highlight all the programs that POGO has engaged in over the last 30 years, this session  focused on four innovative activities that POGO has led, and that have left indelible marks on the enhancement of care for children both in Ontario as well as beyond its borders.  1) Guidelines for supportive care have been developed, adopted and implemented throughout the pediatric oncology community; 2) the POGO satellite system has enhanced the quality of care close to home and enhanced the quality of life for families across the province; 3) a new initiative of a centralized ethics review will lead to improved efficiencies and comprehensive engagement of all treating centres for children eligible for enrollment on clinical trials; 4) development of a set of benchmarks (quality indicators) has provided a unique framework to evaluate the quality of systems for the delivery of care for children with cancer.  These efforts showcase the impact that POGO has had on the pediatric cancer community.

Guidelines for Supportive Care

Carol Portwine, MD, FRCPC, PhD
Pediatric Oncologist, McMaster Children’s Hospital
Associate Professor, Department of Pediatrics
McMaster University, Hamilton

Satellite system

Childhood cancer care is definitionally intense, arduous and takes place over elongated time frames. Since care is typically centralized in tertiary centers, this pattern of care imposes enormous stress on families and patients. In an attempt to address this disruption of lives, POGO developed a system of devolved designated care centers in which defined components of care can be delivered. This presentation briefly described that system.

Mark Greenberg, OC, MB, ChB, FRCPC
Senior Adviser, Policy & Clinical Affairs
Pediatric Oncology Group of Ontario (POGO), Toronto, ON

Centralized Ethics Review

Ronald M. Grant, MD, FRCPC
Pediatric Oncologist
The Hospital for Sick Children, Toronto

Quality Indicators

Nicole Bradley, MHSc (Epidemiology)
Senior Healthcare Analyst & Project Manager
Pediatric Oncology Group of Ontario (POGO), Toronto

 

Posted in 2013 Symposium - Innovation in Pediatric Oncology, Education for Health Professionals | Tagged 2013 Symposium, ethics, OCREB, patient care, Provincial Pediatric Oncology Satellite Program, quality indicators, satellite clinic, supportive care guidelines

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