Addressing Global Data Sharing Challenges. (July 2015)

• Record Type: Journal Article
• Authors: Alter, George C.; Vardigan, Mary
• Other Names: Bull Susan guest-editor.; Parker Michael guest-editor.
• Is Part Of: Journal of empirical research on human research ethics. Volume 10:Number 3(2015)
• Page Start: 317
• Page End: 323
• Publication Date: 2015-07
• Subjects: data sharing -- informed consent -- open science -- privacy of human subjects -- data repositories; Medical ethics -- Research -- Periodicals; Research -- Moral and ethical aspects -- Periodicals; 174.205
• DOI: 10.1177/1556264615591561
• Languages: English
• ISSNs: 1556-2646

Abstract

This issue of the Journal of Empirical Research on Human Research Ethics highlights the ethical issues that arise when researchers conducting projects in low- and middle-income countries seek to share the data they produce. Although sharing data is considered a best practice, the barriers to doing so are considerable and there is a need for guidance and examples. To that end, the authors of this article reviewed the articles in this special issue to identify challenges common to the five countries and to offer some practical advice to assist researchers in navigating this "uncharted territory, " as some termed it. Concerns around informed consent, data management, data dissemination, and validation of research contributions were cited frequently as particularly challenging areas, so the authors focused on these four topics with the goal of providing specific resources to consult as well as examples of successful projects attempting to solve many of the problems raised.