Blog
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.
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.
Beneath the Surface: The Psychosocial Impacts of Precision Medicine
VIEW THE PRESENTATION
Presentation Description:
Precision medicine represents arguably the most exciting advance in pediatric oncology in recent decades. Despite great hope for this new approach to making individualized treatment recommendations for children with cancer, there will likely be associated psychosocial challenges for all stakeholders involved, including patients, parents, clinicians and scientists. Precision medicine trials are very complex, meaning that patients’/parents’ understanding about their treatment options might be limited. Healthcare professionals might also find it difficult to manage the psychosocial impacts of precision medicine for their patients. This presentation summarises the key potential impacts of precision medicine for children with cancer, their families and the professionals who care for them. Professor Wakefield will present data from recent systematic reviews, a large-scale acceptability study, plus emerging prospective data from the first 100 families enrolled in the Australian PRISM precision medicine trial for children with high-risk cancer.
Speaker:
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.
POGO CEO Reflects on The Childhood Cancer Care Plan One Year After Launch
Jill Ross, POGO CEO
Q. Looking back on the past year, which accomplishments stand out for you?
The Childhood Cancer Care Plan was developed by over 200 clinical experts, providing care in clinics and at the bedside day in and day out, as well as parents and survivors, system planners and administrators. It has been wonderful to see many of these same individuals along with new participants readily volunteering their time, expertise and experiences to committees and activities that will drive action on the Plan’s goals.
That said, two other items that particularly stand out, are the launch of the newest POGO Satellite Clinic at Peterborough Regional Heath Centre in fall 2018, bringing care closer to home for patients and their families in that part of the province, and the publication of the latest, high-quality Ontario data in Childhood Cancer in Ontario 1986–2015: A Surveillance Report.
Q. The Plan identifies the need for Champions. Describe how Champions have come on board to help implement the Plan.
The Childhood Cancer Care Plan is a system plan. In addition to POGO, it will take the collaborative efforts of survivors, patients and families, clinical care providers of all types, government, donors and others to achieve its goals. An excellent example of this collaboration is POGO’s work on the Plan’s strategic objective to “promote effective and appropriate care for adolescents and young adults (AYA) treated in all settings.” Adolescents and young adults have unique care needs that require us to bring the best from the childhood and adult cancer care systems.
This year, Champions from across the province—clinical specialists from the POGO network and from Cancer Care Ontario’s adult cancer programs, and survivors of AYA cancer, with the support of the Ministry of Health—have joined forces to identify actions that can be taken to improve care.
Q. Specialized donor-funded support for families, research and survivors is a key driver of the Plan’s success. How has the contribution of donors contributed to moving the goals of the Plan forward?
One of the Plan’s five major goals is to optimize the physical health and emotional well-being of survivors of childhood cancer. Survivors have told us that they are in need of practical and informational resources to help them cope with life after a diagnosis of childhood cancer. With the generous support of an anonymous donor to launch a new initiative and continued funding from The W. Garfield Weston Foundation, POGO has been able to enhance our counselling service for adolescent survivors facing challenges completing school and finding work by introducing the Survivor to Survivor (S2S) Network. With the S2S Network, survivors gain practical skills, build their confidence and connect with others, as they create and deliver informational workshops on key issues for fellow survivors. Feedback from participants so far has been outstanding.
Check out S2S workshop topics and hear from
S2S facilitators about their experience
Donors to POGO also support important research aligned with the Plan’s goals.
Q. This is a provincial plan intended to deliver the best possible care for the best possible outcomes for families, young people with cancer, survivors. What tangible differences are already evident for this population?
The POGO network has been working effectively together to continuously improve the system since POGO created the first Provincial Pediatric Oncology Plan (the Plan’s former name) in the late 1980s. Ontario’s outcomes are among the best in the world. Overall survival from childhood cancer is at an all-time high of 86%.
For children facing a diagnosis of cancer, in alignment with the Plan’s goal of “equitable, appropriate and timely access to emerging and evolving oncology drugs, diagnostics and technologies,” POGO ensures pediatric cancer expertise informs new drug funding policies and continues to lead the process to enable access to the latest collaborative clinical research studies for Ontario’s children facing cancer. POGO’s Therapeutic and Technology Advisory Committee of experts from across the province is now in place to continually scan the new science for opportunities to enhance care in Ontario.
Work also continues to enhance long-term outcomes for survivors of childhood cancer. Most survivors need lifelong monitoring to ensure that the late effects of their disease and its treatment are managed in such a way as to ensure the best quality of life possible. Survivors need reliable access to high quality primary and specialty care but, too often, access to primary care is a challenge. POGO’s Integrated Provincial AfterCare Steering Committee, composed of clinical and survivor representatives, aims to connect each survivor with a primary care provider in their home community and to ensure that primary care providers and the cancer specialists work effectively together to provide optimal monitoring.
Q. When we look ahead one year from now, what are some immediate priorities arising from the Plan?
While our clinical outcomes in Ontario are excellent, there are other important outcomes that need concerted attention. In particular, we hear from the clinical team and parents alike that the Plan’s goal about “ensuring integrated psychosocial care,” and objectives to “enhance supportive care” and “meet educational and information needs” are particularly challenging.
POGO’s guidelines program ensures that Ontario has excellent, internationally recognized, evidence-based supportive care guidelines, but more needs to be done to ensure that the recommendations in those guidelines can be put into day-to-day practice. The benefit of guidelines is real; a US children’s hospital, for example, saw a significant decrease in patient vomiting after implementing the POGO guideline for prevention of chemotherapy-induced vomiting. POGO is committed to working with our partners to facilitate evidence-based guideline uptake.
While we made an excellent start this past year, we also have more work to do to meet the Plan’s goal of ensuring “the right data are available and being used to drive an effective childhood cancer system.” We are working with hospital partners to give them the data they need to monitor quality and do local planning, and in turn, contribute to strong province-wide planning. We will also be updating the POGO Surveillance Report this year, and we are working with data partners to improve the information available about AYA cancer.
Most importantly, we look forward to strengthening existing partnerships and developing new ones with organizations that can help advance the Plan’s important goals for childhood cancer patients, families and survivors.
Identifying Increased Risk for a Cancer Predisposition Syndrome
This POGO-funded research is helping children with its early detection of cancer predisposition syndromes.
Approximately 10% of children diagnosed with cancer have an underlying cancer predisposition
syndrome (syndrome), a condition (often inherited) that increases their risk of developing one or many cancers throughout their life. Genetic testing can be used to identify children with a syndrome, but to avoid unnecessary testing and possible delays, physicians need a way to determine which children to test.
There are over 125 syndromes known to be associated with cancer in children. In some cases, knowing whether a child has a specific syndrome will change the treatment. Identifying a syndrome also allows the healthcare team to develop a care plan to monitor the child for future cancers once treatment is complete, and to recommend monitoring for siblings.
In 2017, Dr. Catherine Goudie was awarded a POGO fellowship for her project “Identifying Children at Increased Risk for a Cancer Predisposition Syndrome: The McGill Interactive Pediatric Oncogenetic Guidelines.” Overseen by principal investigators Dr. David Malkin and Dr. William Foulkes, the project aims to develop an e-Health tool that doctors can use to help them decide which children should be referred for genetic testing.
Related Story : A Genetic Mutation: A Lifetime of Cancer Screening
Prior to becoming a POGO Fellow, Dr. Goudie and her team in Montreal spent three years building
approximately 90 algorithms for each type of childhood cancer. These yes/no questions relate to
items such as the age of the child, features of the tumour and family history. The first version of the
tumour algorithms was reviewed by genetic and oncology experts from Canada, the United States
and the United Kingdom.
The aim of the POGO-funded research was to support Dr. Goudie in her work to evaluate the performance of the tool with children at 11 Canadian hospitals. The evaluation was split into two streams.
Dr. Catherine Goudie, MD, FRCPC
“Our first priority was making sure this tool would do no harm,” says Dr. Goudie. “In order to do this, we looked at patients in Canada who have already been diagnosed with a cancer predisposition syndrome and who developed a cancer in childhood, meaning their physicians successfully identified the syndrome without our tool. We confirmed that our algorithms would have identified these children for genetic referrals at the time of their cancer diagnosis, therefore confirming that the tool performs at least as well as clinicians have.”
The second stream of the evaluation is ongoing and leverages precision medicine research at The Hospital for Sick Children and other hospitals in Canada and the US. These institutions are doing comprehensive genetic sequencing on pediatric cancer patients, meaning that all children undergo genetic evaluation regardless of whether they are suspected to have a syndrome.
“We will test our algorithm on the medical profiles of these children to determine if the tool indicates that the child should be referred for genetic assessment. We will then compare our results with those obtained from the patients who participated in the comprehensive genetic sequencing. Therefore, we are prospectively testing the performance of our tool.”
Dr. Goudie explains that, in most hospitals worldwide, the facilities, human resources, infrastructure, expertise, or funding to offer comprehensive genetic testing in all kids diagnosed with cancer are not available. Ultimately, the goal of the tool is to give children with a syndrome the opportunity to be diagnosed and treated appropriately. In addition, the tool can be used to educate medical professionals around the world.
Dr. Catherine Goudie received a prestigious clinical investigator award from the FRQ-S in Quebec and returned to Montreal in July 2018 to continue this research as a collaboration between the Montreal Children’s Hospital and The Hospital for Sick Children. The FRQ-S is a government organization that, annually, funds select clinician investigators in Quebec to do health research.
“For someone young like me, who doesn’t have a lot of experience, having POGO to support my work was a huge stepping stone. I am certain that POGO’s support and the credibility that this organization has internationally, helped me get this next award in Quebec. I am really grateful for this opportunity.”
This story was featured in POGO’s 2018 Community Impact Report.
The MIPOGG App will be available in September 2019.
Pediatric Oncologist Cycles across Canada to Raise Funds for Kids with Cancer
I first entered the world of childhood cancer as a counsellor at Camp Trillium in the year 2000. It quickly became apparent that this week away was often the only break that these families would get from their time at the hospital.
Fast forward to today, I am now a pediatric oncologist. I am the person who tells families their child has cancer. Often I get to tell them their child is cured and watch the relief flood over their faces. But for 1 out of every 5 kids, I still have to say “the cancer is back, and it might take your child’s life.” In addition, as the Medical Director of the POGO AfterCare program at McMaster Children’s Hospital in Hamilton, I see in my practice that surviving cancer isn’t the end of the story. As many as 60% of survivors will experience at least one chronic health problem due to their cancer and/or its treatment.
Since becoming an oncologist, I have been privileged to get to walk the cancer journey with so many kids and families. That is why three years ago, I upgraded my commuter tank with a basket to a road bike to ride in support of kids’ cancer care. Since then, I’ve been hooked. I love the feeling of sunshine on my back, and watching the scenery race by on a gorgeous day outside. This year, I am taking it to the next level and riding across Canada in Coast to Coast’s National Kids Cancer Ride taking place from September 4 – 21, 2019.
I am riding to support organizations that I’ve seen make a tangible difference to our families–the Children’s Hospitals (including mine!), the cancer camps, advocacy and support organizations, research funding and more. I am riding for our families–the ones who lost kids, those who are still supporting childhood cancer survivors, and the ones that are facing a brand new diagnosis. I am also riding for my dad who passed away after his own second cancer relapse this past year. I got to hear the words I often say, “His cancer is now incurable”…so I am riding in the hope that one day we’ll never have to say or hear those words again.
For those not familiar, this ride equates to about 150km/day for 18 days, as we cycle across Canada from Vancouver to Halifax during Childhood Cancer Awareness month in September. The ride raises funds through the Coast to Coast Against Cancer Foundation, which supports so many programs for our families affected by childhood cancer. Please consider supporting me here through donations: http://staceymarjerrison.nationalkidscancerride.com, as well as spreading the word.
I will be posting updates on my twitter feed and instagram accounts @staceymarj. I hope you will follow along as this journey continues, and that you come out to cheer us on as we ride through your city!