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.
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Susan
4 Sep 2015
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
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Susan
3 Sep 2015
A recently published open access article that may be of interest is:
Sharing Research Data and Intellectual Property Law: A Primer
See http://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.1002235 -
Susan
3 Sep 2015
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/
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Amelie
26 Aug 2015
Hi,
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 -
phaikyeong
12 Aug 2015
Thanks for starting this group, Susi!
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