#31-Trust & Timing: Parental Decisions About Secondary Findings

Understanding the decision of parents to opt-out of medically actionable secondary findings offered through genome sequencing

Guest Bios:

Robin Hayeems is a Senior Scientist in Child Health Evaluative Sciences (CHES) at The Hospital for Sick Children (SickKids) and an Associate Professor in the Institute of Health Policy, Management and Evaluation (IHPME) at the University of Toronto. She is trained in genetic counselling public health and bioethics, health policy research, and health services research.. Her research focuses on the development, implementation, and evaluation of genomic screening and diagnostic tools for the maternal-child health context. As a member of several provincial advisory committees, her work informs and is informed by policy development in this area.

Abby Hansen is a Master of Science in Genetic Counselling student at the University of British Columbia and a Clinical Research Project Assistant at The Hospital for Sick Children (SickKids). Her research focuses on exploring patient experiences with genetic testing and the factors that shape genetic testing-related decision-making. Drawing on both her research experience and clinical training, Abby is passionate about providing compassionate, patient-centred care, and supporting individuals and families in understanding complex genetic information and making informed healthcare decisions.

In this episode we discuss:

- Exploring the unexpectedly high opt-out rate for medically actionable secondary findings in Genome-Wide Sequencing Ontario (GSO) and how Canadian guidance surrounding non-diagnostic results differs from U.S. standards.

- Unpacking how the emotional workload of managing acute medical crises leads some parents to decline secondary findings to avoid living under a "cloud of worry," balancing proactive healthcare with current family peace of mind.

- Challenges around pediatric autonomy, parental consent misunderstandings regarding data re-analysis, and the clinical case for flexible, two-step disclosure models.

- Educational tools, scripts, and capacity-building strategies designed to improve genomic literacy among non-genetics providers as genome sequencing expands into mainstream care

Resources

- Genome Sequencing Ontario URL website

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