Siblings and Discordant Eligibility for Gene Therapy Research: Considering Parental Requests for Non-Trial "Compassionate Use”

Jamie Webb, Lesha D Shah, Alison Bateman-house

Research output: Contribution to journalArticlepeer-review

Abstract

Deciding whether to grant an expanded access request for a child whose sibling is enrolled in a gene therapy trial involves a number of complex factors: considering the best interests of the child, the psychosocial and economic impact on the family, and the concerns and obligations of researchers. Despite the challenges in coming to a substantively fair outcome in cases of discordant eligibility, creating a procedurally fair decision-making process to adjudicate requests is essential.
Original languageEnglish
Pages (from-to)147775092098357
JournalClinical Ethics
DOIs
Publication statusPublished - 7 Jan 2021

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