On 22 July, we had our final symposium in the series of symposia hosted by the Vital Circulations network. This one-day online symposium is about the circulation of data, or more specifically, vital data – data about bodies, about life and about death. It explores how data and the values and practices of data feature in ‘vital circulations’ and brings together scholars from different disciplines, including arts and humanities and social sciences, to examine data and the flow of data in a provocative way. It covered topics ranging from the Real World Evidence, values and beliefs around data mining, ethics of genetic research and citizen-led forensics and was absolutely fascinating and thought provoking! It gives me the opportunity to think about the implication of data practices in different contexts and its vitality, and also at the same time the data in my everyday life.
In the first talk, Eva Hilberg, a post-doctoral researcher based at the University of Sheffield critically unpacks the promises of Real World Evidence. She discusses the epistemic revolution carried by Real World Evidence in the field of pharmaceutical regulation and focuses on the case of the US, EU and the UK. Real World Evidence (RWE) has emerged in pharmaceutical regulation that carries the promise to include evidence coming from Real World Data (RWD) that is not gathered through randomised controlled trials, challenging the medical epistemology and potentially leading to more inclusion of patient experiences and the improvement of outcomes but at the same time it might also be exploitative of unpaid labour. There are also tensions in the evaluation of the quality of data across sites and the paper mentions different modalities of such evidence, including registries, insurance data collections, and more individualised digital health applications. Eva looks at the regulations around RWE and argues that the resulting tensions are effects of an instance of promissory regulation that might mean more fragmentation of access to treatment. It is so interesting to hear from Eva about this hierarchy of evidence, explore what the promise of RWE might mean, rethink the epistemology it carries and what it will actually mean for patients. I keep a watch that notes down my heart rate and the steps I walk everyday and I wonder about the validity of this data!
Next, Itzelle Medina Perea, also from University of Sheffield, talks about some preliminary findings from the project she is working on, Patterns in Practice (PIP), an AHRC-funded project that is exploring how practitioners’ beliefs, values and feelings interact to shape how they engage with and in data mining and machine learning, which they see as forms of ‘narrow AI’. Based on the preliminary analysis of interviews, focus groups, diaries and observations with a team working on a drug discovery project at a major UK pharmaceutical company, Itzelle talked about the beliefs, values and feelings these practitioners have in their engagement with such new practices, namely, data mining and the use of AI techniques in drug discovery. Itzelle also noted how such beliefs, values and feelings play a role in crafting their culture of practices. When thinking about new technologies it is easy to focus on the promise of the technologies and ignore how those technologies are actually being used and being incorporated into practices, and Itzelle’s talk really made me think about the role of the emotions of the practitioners in their work. Data mining and machine learning technologies are fundamentally embedded in human practices and human values.
We then moves to a more philosophical discussion and hears from Ilaria Galasso, postdoctoral researcher in the MISFIRES ERC project on collaborative innovation in healthcare for the collective good, at University College Dublin. She talks about genetic data and the collective good and problematizes the notion of collective good in genetic research. She discusses the dilemma between public and individual interests, between sharing in the name of public good and the right not to share under the banner of individual sovereignty. The talk draws on the documentary analysis and interview data with research leaders and patient advocates with a particular focus on two recent controversies: the case of the UK institute Wellcome Sanger, and the case of the company Genuity Science,. After critically weighing collective good against individual good and discusses consequentialist ethics and deontological ethics, this talk advocates for a ‘participant as leaders’ approach in genetic research, which she highlights is much more than just ‘have a seat at the table’. As argued by Ilaria, it is vital to facilitate the capacity and competency building in the communities, especially the disadvantaged and historically exploited communities in order to produce research ‘conducted BY them rather than ON them’, which can help maximize collective good and minimize risk of exploitation. This paper extends this argument to the notion of global good and argues for investment on research to be conducted by low-income countries themselves, rather than conducted by developed countries on them.
In the last talk we hear from Ernesto Schwartz-Marín, who is a Science and Technology Studies scholar working in the fields of biomedicine, forensics, and citizen science at Exeter University. His talk is about his ethnography at Mexico on citizen-led forensics and discusses the participatory challenges to the politics of vitality in the search for the disappeared in Mexico. In Ernesto’s research, participant observation and participatory action research are combined. He worked with mothers of the disappeared in Mexico in creating citizen-led efforts to gather DNA, an alternative form of bio-banking, in the search for the disappeared. His talk is really interesting and highly reflexive. He discusses different aspects of such grass-root intelligence units and comments that at the center of citizen-led forensics is weakness and vulnerability, which has paradoxically become its strength. It does not start in the knowing, nor with a position of authority; quite on the contrary, it starts from the margins and challenges what has been considered knowable. It starts with ‘what if’? Ernesto also comments that this is an effort to seek to push certain socio-technical boundaries, while at the same time it may carry the risk of reinforcing the very practices it hoped to challenge. This talk has given me so much food for thought!
This symposium marks a beautiful conclusion to our series of symposia. We have learnt about biomes, bodies and buildings in the first symposium, about organ donation in the second symposium and vital data in this final symposium. I have thoroughly enjoyed listening in and absorbing all the fabulous talks from the three symposia! We have sought to examine different aspects of vital circulations as embedded in the social fabric. We have travelled from built environment, to a more virtual existence, an almost post human existence. I look forward to seeing what comes out of this discussion!