Welcome to the discussion group about ethics and sharing individual-level research data. Please post to let us know about your experiences, questions and resources you've found or developed.
Thanks for starting this group, Susi!
For those interested and who haven't come across it already, it's worth having a look at the report and associated resources by the IOM/National Academies on the potential benefits and harms of sharing clinical research data. It includes varied considerations on ethical and governance issues from the perspectives of different stakeholders, and can be accessed here: http://iom.nationalacademies.org/Reports/2015/Sharing-Clinical-Trial-Data.aspx
Thanks Amelie, that's a great resource. We have some additional reports listed our resource page as well - see https://bioethicsresearchreview.tghn.org/ethics-and-data-sharing-resources/
A recently published open access article that may be of interest is:
Sharing Research Data and Intellectual Property Law: A Primer
The WHO has just summarised the results of its consultation on Developing Global Norms for Sharing Data and Results during Public Health Emergencies. See http://www.who.int/medicines/ebola-treatment/data-sharing_phe/en/ for details