Bateman-house, Alison

Shah, Lesha D

Webb, Jamie

English

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

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

https://www.research.ed.ac.uk/files/199054307/Siblings_and_Discordant_Eligibility_for_Gene_Therapy_Research_Considering_Parental_Requests_for_Non_Trial_Compassionate_Use_.pdf

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

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