Data sharing and community-engaged research

Affiliations

¹ Center for Precision Medicine and Genomics at the Department of Medicine, Columbia University Irving Medical Center; Division of Ethics, Department of Medical Humanities and Ethics, Columbia University Irving Medical Center; New York, NY 10032, USA.
² Stanford Center for Biomedical Ethics and Departments of Medicine and Pediatrics, Stanford Medicine, Stanford, CA 94305, USA.
³ Norton Children's Research Institute Affiliated with the University of Louisville School of Medicine, Louisville, KY 40202, USA.

Maya Sabatello et al. Science. 2022.

. 2022 Oct 14;378(6616):141-143.

doi: 10.1126/science.abq6851. Epub 2022 Oct 13.

¹ Center for Precision Medicine and Genomics at the Department of Medicine, Columbia University Irving Medical Center; Division of Ethics, Department of Medical Humanities and Ethics, Columbia University Irving Medical Center; New York, NY 10032, USA.
² Stanford Center for Biomedical Ethics and Departments of Medicine and Pediatrics, Stanford Medicine, Stanford, CA 94305, USA.
³ Norton Children's Research Institute Affiliated with the University of Louisville School of Medicine, Louisville, KY 40202, USA.

Abstract

Data sharing must be accompanied by responsibility sharing.

1. Final NIH policy for data management and sharing (2020. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html).
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1. Rehm HL et al., Cell Genomics 1, 100029 (2021). - PubMed
1. Data sharing and the future of science. Nature communications 9, 2817 (2018). - PMC - PubMed
1. CDC, CTSA Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. (https://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf, 2011).