Data Rights and Responsibilities A Human Rights Perspective on Data Sharing

Type Journal Article Author Theresa L. Harris Author Jessica M. Wyndham URL http://jre.sagepub.com/content/10/3/334 Volume 10 Issue 3 Pages 334-337 Publication Journal of Empirical Research on Human Research Ethics ISSN 1556-2646, 1556-2654 Date 2015-07-01 Extra 00000 PMID: 26297755 Journal Abbr Journal of Empirical Research on Human Research Ethics DOI 10.1177/1556264615591558 Accessed 2016-01-22 22:34:41 Library Catalog jre.sagepub.com Language en Abstract A human-rights-based analysis can be a useful tool for the scientific community and policy makers as they develop codes of conduct, harmonized standards, and national policies for data sharing. The human rights framework provides a shared set of values and norms across borders, defines rights and responsibilities of various actors involved in data sharing, addresses the potential harms as well as the benefits of data sharing, and offers a framework for balancing competing values. The right to enjoy the benefits of scientific progress and its applications offers a particularly helpful lens through which to view data as both a tool of scientific inquiry to which access is vital and as a product of science from which everyone should benefit.