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

Webb J., Shah LD., Bateman-House A.

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.

DOI

10.1177/1477750920983571

Type

Journal article

Journal

Clinical Ethics

Publisher

SAGE Publications

Publication Date

12/2021

Volume

16

Pages

359 - 363

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