Health-y Sharing of Human Data

• Main Author: OLESEN, Sarah
• Format: text
• Language: English
• Published: Institutional Knowledge at Singapore Management University 2015
• Subjects: sensitive data; confidential data; data sharing; open access; Library and Information Science
• Online Access: https://ink.library.smu.edu.sg/lib_events/7; https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1006&context=lib_events
• Institution: Singapore Management University

Data from research with humans is not published or shared at the same rate as other disciplines. But as more funding agencies and journal publishers, including those responsible for human studies, encourage and incentivise researchers to publish these data, more are seeking to do so. Human data often include personal and sensitive information that makes them subject to privacy laws and the human research ethics standards that govern research institutions. In many cases, human data can be published and shared safely and ethically with great success when it is planned for, participants are informed, and privacy is maintained by confidentialising the data. This presentation will discuss the legal, ethical and practical issues faced by institutions who plan to publish human data. It will provide practice guidance and resources about how these can be navigated safely, so that researchers and their institutions can reap the benefits of data publication.