Ethics and Consent in the Age of Precision Medicine – Forging a Path Forward


Presentation Description:
According to the U.S. National Cancer Institute, precision medicine is “a form of medicine that uses information about a person’s genes, proteins, and environment to prevent, diagnose, and treat disease.” Based on the use of targeted therapies, precision approaches hold great promise to improve outcomes for children and adults with cancer. However, precision medicine also poses challenges related to informed consent. First, precision pediatric oncology has yet to realize its potential, raising concerns about overpromising and unrealistic expectations of benefit. Second, because precision pediatric oncology remains largely experimental, clinicians must generally apply standards of consent appropriate to research. Third, precision approaches often yield insights about patients’ and families’ inherited cancer risk; as a result, clinicians must incorporate elements of genetic counseling into the informed consent process. This presentation will address these and other challenges that pediatric oncology clinicians will increasingly face as we move into the era of precision cancer medicine.

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.

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