From Person-Centered to Family-Centered: Navigating Practical and Ethical Issues in Health System-Led Contact for Cascade Screening

ELSIcon2024 • Panel • June 12, 2024 

Authors:

Moderator: Emily Bonkowski, ScM, CGC (she/her/hers) - St. Jude Children's Research Hospital

Panelist: Leila Jamal, ScM, PhD, LGC (she/her/hers) - National Cancer Institute & National Institutes of Health Bioethics Department

Panelist: Katherine Bonini, MS, MA, CGC (she/her/hers) - Mount Sinai Hospital

Panelist: Nora B. Henrikson - Kaiser Permanente Washington

This moderated panel presentation included experts from the fields of genetic counseling, health services research, patient advocacy, and bioethics to present evidence and conceptual work supporting the claim that systems-led contact of relatives is effective and can be ethically desirable under specific conditions. Speaker 1 opened the session with an overview of the growing evidence about patient and provider attitudes towards system-led contact and discussed the normative implications of these findings. Speaker 2 provided an in-depth view of a cascade screening program that used person-centered design to successfully implement system-led contact. Speaker 3 shared their perspective on system-led contact as a cancer survivor and patient advocate. Speaker 4 presented a normative justification of system led contact, including a proposed method for distinguishing which conditions this approach is ethically appropriate for. By bringing together disparate perspectives on this issue, we hope to break the argumentative gridlock that portrays the ethical debate about cascade screening as a zero-sum tradeoff between individual confidentiality and benefits to families. 

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