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Article type: Review Article
Authors: Mattos, Meghan K.a; * | Lingler, Jennifer H.b
Affiliations: [a] Acute and Specialty Care, University of Virginia School of Nursing, Charlottesville, VA, USA | [b] Department of Health and Community Systems, University of Pittsburgh School of Nursing, Pittsburgh, PA, USA
Correspondence: [*] Correspondence to: Meghan K. Mattos, PhD, Assistant Professor, Acute and Specialty Care, University of Virginia School of Nursing, McLeod Hall- Room 5012, PO BOX 800782, Charlottesville, VA, USA. Tel.: +1 434 243 3936, E-mail: ms2bv@virginia.edu.
Abstract: New advances in digital technologies and data-collection methods support expansion of the traditional research model in the current Digital Age. As researchers continue to explore ways to collect, manage, and share individual-level research study data, investigators must also acknowledge new ethical considerations that arise. To ensure protection of research participants, participants must remain a priority across the research continuum by researchers, institutional review boards, funding agencies, and consumers. Big data and data sharing also require additional investments and oversight to ensure proper management and, and even more important, protection of human subjects.
Keywords: Data disclosure, data management, data sharing, ecological momentary assessment, ethics, research subjects
DOI: 10.3233/JAD-190725
Journal: Journal of Alzheimer's Disease, vol. 71, no. 4, pp. 1089-1091, 2019
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