Information shared on social media is being regularly used in research projects without users’ consent, a study suggests. Experts have called for tighter control of the practice, with fresh guidelines needed to ensure personal data is being used appropriately. Privacy and consent Researchers at the University of Edinburgh say ethics frameworks around consent, privacy and ownership for such studies are not keeping pace with technological developments. Online behaviour The plea comes as more and more social media data is used by researchers to reveal valuable insights into our behaviours, feelings and opinions. Researchers may be using information that has been willingly shared in the public domain but this doesn’t give them carte blanche to do as they please. Dr Claudia PagliariDirector of Global eHealth, Usher Institute Data mining Advances in tools to draw patterns from large datasets have opened the door to research projects that mine this deep seam of information. Such techniques are, for example, being used to probe whether people’s social media updates can predict the onset of mental health problems. Health studies The authors found that, out of 13 sets of ethics guidelines developed or endorsed by Research Councils UK, only four explicitly mentioned the use of social media data in research. They also analysed 156 published health studies that involved social media data and discovered that less than a third reported having made any ethical consideration of the use of personal information. Fresh guidelines Only two of the nine studies from UK institutions made reference to RCUK recommended guidelines. The research is published in the journal Research Ethics. Our study highlights a significant gap in UK guidance on mining social media data for research purposes. Funding bodies, learned societies, research organisations and journals – in addition to the researchers themselves – all have a role to play in ensuring such research is carried out to the highest ethical standards. Dr Claudia PagliariDirector of Global eHealth, Usher Institute Related links Journal article Publication date 12 Nov, 2017
