Developing a community-led rare disease ELSI research agenda
Courtney Berrios,
Macy McBeth,
Andrea Bradley-Ewing
et al.
Abstract:Background
Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.
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