who we are Cate Heeney (CSIC IFS) Nadja Kanellopoulou (MI) empirical ethics /sociology of bioethics data sharing and collaboration in statistics and genomics research Nadja Kanellopoulou (MI) legal and social shaping of biobanking research relationships EU data protection, ICT, e-health governance

Topography of data sharing Catherine Heeney ISSTI Retreat 2013

The features of a region or locality collectively This is partial and most map making is anyway – if they haven’t seen it the chances are it wont be on the map that is true of what I’m presenting today.

Big Data variety velocity volume Small data Medium sized Data? So we are in the era of big data now – although of course you have people saying that this is not helpful – But what does the notion of big data add – it probably shouldn’t only be thought of as an era given the idea that we are some linear progression and that other types of data sharing don’t still exist with their own implications, it is about scale, and there are various discourse accompanying this such as ideas of open access – and the route to progress in science for example research on the genome for example being about having access to more statistical power. Rather than the data Yet it does not seem terribly useful to think about the data being big It prompts a few questions is there a space factor as it implies that small there is less of it – that is sensible but again is it a quality of the data? Have we been on a journey from small data to big data passing medium sized data on the way? volume

managed access data driven informal access collaborations Clinical trials Social networking/communications Risky people Social care and housing records managed access data driven Identifiable data Sick people police Criminal records commercial companies clinicians Health records informal access Cohort studies Local authority collaborations Research data hypothesis driven Researchers Data types Data subjects or reasons why you might be the subject of data sharing members of a population is really wide of course – could mean different things for different purposes Users Sources Modes of access – a repository can be a biobank of course or some other type sociotechinical arrangment for holding and allowing secondary use of data – the UK data archive is another example from the research world but I guess the UK DNA database also might qualify. Rules governing access – what kind of formal ethical structures apply informal access might have some higher level rules which are more or less interpreted as applying within existing permissions given by previous REC approvals or existing consent procedure – or sometimes because the scientist trusts the other person and she gave a really interesting presentation at a conference he was at and he is sure they will help find the answer for a patient. repositories Transaction data Small tissue collections open access Surveys and censuses Central government Healthy people Blood Bank Members of a population Biobanks

‘Ethics’ and the sharing of data about human beings Socio-ethical relationships Context Assemblage The role of ‘formal’ ethics Consent Confidentiality We are aware of the notions of coproduction which are increasingly applied to formal ethics and science and we would not wish to say that law and formal ethics are embedded in various ways in the topology and any possible configurations available from the topography I’ve shown. However, my thoughts relate to the idea that there are socio- ethical expectations embedded in the relationships in which data arises, these apply to use, implications of use and so on. Nissenbaum a legal philosopher has given a compelling account of context and why expectations are important and are tied to contexts. However, how to bound the context and fix it given the nways relationships possible in my partial map of the data sharing terrain – here the assemblage is useful. This is something that Latour uses but strips of ethical or moral meaning in a way that is why I have gone back to Delueze not only because he is also French nor even because he used first with Guattari in 1000 plateaus but because – for Delueze assemblages do contain socio-ethical signficance albiet not of the bounded context type that may be most useful when attempting to come up with governance for this I apologise to Nadja And just to end on a negative note I am going to say how formal ethical structures which rely on fixed points to make sense of configurations that can involve all of the interactions I attempted to show and all the ones I didn’t show how does consent to configurations that might change through tiny adjustments in any of the features I described and the interactions between them Confidentiality is to protect the data by anonymising it is different potentially in other settings but given that research data is commonly distributed outside the context in which it is collect this is important. Given the right configurations things are not necessarily confidential Nyholt Gitscher ancestry databases Homer paper that caused the WT to change from open access to managed access ISSTI Retreat 2013