Adminstrative data for research - powerful and problematic

Nature article: Researchers wrestle with a privacy problem
22 September 2015

"The data contained in tax returns, health and welfare records could be a gold mine for scientists — but only if they can protect people's identities." 

http://www.nature.com/news/researchers-wrestle-with-a-privacy-problem-1.18396

"...the enormous potential power of 'administrative data' — information collected during routine provision of services, including tax returns, records of welfare benefits, data on visits to doctors and hospitals, and criminal records."

http://www.nature.com/news/data-overprotection-1.17825?WT.ec_id=NATURE-20150625

Data overprotection

Draft European rules governing privacy threaten to hamper medical research.

23 June 2015

"The regulations proposed in 2012 by the commission allow the use of personal data only after an individual has given “specific, informed and explicit” consent. It is, after all, directed primarily at potential misuse of data gathered at websites or apps such as Facebook. But it made exceptions for health research because it recognized that such work depends on broad models of consent in which participants can agree for their data to be used in a variety of research studies, and that — subject to suitable safeguards — the data can be stored for future use.

Parliamentary amendments agreed last year changed the emphasis, and in doing so removed the exemption for research. If accepted, the amendments would require consent from participants for each new study. That would impede research."

Privacy Tools for Sharing Research Data project at Harvard University

"Integrating Approaches to Privacy Across the Research Lifecycle: Long-Term Longitudinal Studies" -  Privacy Tools for Sharing Research Data project at Harvard University held a workshop titled "Integrating Approaches to Privacy across the Research Data Lifecycle." Over forty leading experts in computer science, statistics, law, policy, and social science research convened to discuss the state of the art in data privacy research. The resulting conversations centered on the emerging tools and approaches from the participants’ various disciplines and how they should be integrated in the context of real-world use cases that involve the management of confidential research data.

Research report: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2469848##