Return from DCC – thoughts on ethics

I came back from another DCC international conference in Edinburgh (1-3 December) and almost immediately succumbed with flu – so this is a late post. Fortunately others including Kevin Ashley in the ulcc da blog and Chris Rusbridge in the digital curation blog have given quite detailed reports of many of the excellent sessions and presentations.

I just wanted to pick up on one aspect which struck me from the keynote Genomic Medicine in the Digital Age by Prof David Porteous and which has also been picked up and commented on by Mags McGeever’s post Healthy Consent on the DCC Blawg, namely ethical consent and research data.

Prof Porteous’ talk focussed on his work in Generation Scotland , and ethical issues around the process of “open consent” (an interesting long-term variant of informed consent) formed part of this. A particular bone of contention was the stance taken by the chairman of the National Information Governance Board for Health and Social Care on research data -see the Guardian report of his views.

Prof. Porteous is the most recent speaker voicing a concern which I’ve heard expressed now by many different researchers – someone really should arrange that offer to the chairman of a “cup of tea and a wee chat” to put across the long-term damage to health research which is the reverse side of this argument.

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