title: Data Rights and Responsibilities: A Human Rights Perspective on Data Sharing.
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.
authors: American Association for the Advancement of Science, Washington, DC, USA tharris@aaas.org.
authors: Theresa L
authors: TL
authors: Harris
authors: American Association for the Advancement of Science, Washington, DC, USA.
authors: Jessica M
authors: JM
authors: Wyndham
mesh_terms: D035843:Biomedical Research; D003299:Cooperative Behavior; D003625:Data Collection; D006806:Human Rights; D006801:Humans; D033181:Information Dissemination / Q000941:ethics*; D007391:International Cooperation; D057766:Policy; D012586:Science / Q000941:ethics*; D066262:Social Norms; D012941:Social Responsibility; D012945:Social Values
keywords: Article 15; data; ethics; human rights; informed consent; privacy; right to science