Data Use, Research Translation, and the Management of Infrastructures
11–13 January 2017
Jury's Inn Hotel, Exeter
Niccolò Tempini, Sabina Leonelli
Aims of the workshop
This workshop aims to trace the variety and mutual interlinking of contemporary data practices in biomedicine, through the discussion of the epistemological, ontological, methodological and societal implications of the development and adoption of complex digital data infrastructures and their methods and techniques. In particular, we wish to focus on the development of large datasets and databases, and their relation with the research practices that they are designed to support, foster, inform and organize. Multiple perspectives are needed to understand and triangulate between, among others, the premises and rationales for the development of infrastructures and the assemblage of large datasets, the relationship with the wider ecologies in which managed datasets are embedded and used as evidence base, the role of information technology in their management, and the effects of these solutions on scientific practice, the construction of knowledge, and institutions and communities within and beyond academia.
One significant feature of science conducted through digital data infrastructures is the variety of processes, knowledges, material and human resources, skills and techniques that need to intersect in order to move data across settings and thus offer new opportunities for analysis and re-use. This workshop brings together a range of experts on this topic, including leaders of exemplary infrastructures, and scholars in science and technology studies, philosophy and history of science and medicine, information systems and computer science. Our goal is to enhance existing understandings of (1) the ways in which biomedical data are produced, disseminated and used; (2) the scientific, social, economic and cultural embedding and implications of such processes; and (3) the extent and manner in which interdisciplinary collaborations across the natural and social sciences, and the humanities, can inform these processes and ensure their sustainability and long-term fruitfulness.
Places are limited and all costs will be covered by organisers.
All speakers in sessions have a total of 40 minutes, where their talks should be 25–30 minutes long, with the remaining 10–15 minutes devoted to discussion. Panelists are asked to each in turn present their work or infrastructure for a maximum of 10 minutes, followed by discussion.
You can download the workshop booklet, which contains the below schedule as well as the presentation abstracts and a list of participants.
Wednesday January 11th
1:00pm Registration and lunch
2:00 Welcome, introduction to the workshop and ERC project [slides: pdf], and presentation “Concealment and Discovery: The Role of Information Security In Biomedical Data Journeys” [Slides: pdf]: Sabina Leonelli and Niccolò Tempini.
3:00 Session 1: Data, Evidence and Causation in Biomedicine. Chair: Sabina Leonelli.
- 3:00 David Teira (UNED Madrid): Evidential pluralism and regulatory paternalism in drug testing.
- 3:40 Julian Reiss (University of Durham): In defence of statistical minimalism.
4:20 Coffee break
4:50 Session 1 (continued):
- 4:50 Federica Russo (Free University of Amsterdam): Evidence in biomarkers research.
- 5:30 Sara Green (University of Copenhagen): P4 medicine and the risk of premature translation. [Paper: pdf]
6:10 General discussion
6:30 Closing time
Thursday January 12th
9:00 Session 2: Managing Infrastructures for Data Journeys. Chairs: Staffan Müller-Wille and Susan Kelly (University of Exeter).
- 9:00 Pilar Ossorio (University of Wisconsin): From repositories to lakes: Infrastructures for sharing sensitive human data while negotiating values and cultures.
- 9:40 Lora Fleming (University of Exeter): Data mashups: Linking human health and wellbeing with weather, climate and the environment.
10:20 Coffee break
10:50 Session 2 (continued):
- 10:50 David Ribes (University of Washington): The interoperability of infrastructures: Cases from an ecology of AIDS research. [Paper: pdf]
- 11:30 Margunn Aanestad (University of Oslo): Challenges of governing information infrastructures with multiple value logics.
12:10 General discussion
2:00 Panel Discussion: Developing Infrastructures to Foster Data Re-Use. Chair: Niccolò Tempini (University of Exeter).
- Andy Boyd (Avon Longitudinal Study of Parents and Children – ALSPAC)
- Harriet Gordon-Brown (Public Health England – PHE, and the Medical and Environmental Data Mash-Up Infrastructure – MEDMI)
- Simon Forbes (Catalogue of Somatic Mutations in Cancer – COSMIC)
- David Ford (Secure Anonymised Information Linkage Databank – SAIL)
- Robin Williams (Alan Turing Institute – ATI)
3:30 Coffee break
4:00 Session 3: Between Bench and Bedside. Chair: Gail Davies (University of Exeter).
- 4:00 Giuseppe Testa (IEO Milan): The ordering data and reconfiguring life at risk across societal, epidemiological and molecular scales: Insights from the EDC-MixRisk project.
- 4:40 Alberto Cambrosio (McGill University): Knowledge architectures for genomic data interpretation in the field of oncology.
- 5:20 Rachel Ankeny (University of Adelaide): Standardisation of case reporting in medicine: Maximising re-use and impact of data.
6:00 General discussion
6:30 Closing time
Friday January 13th
9:00 Session 4: Value and Data Journeys: Generation, Translation, Control, Capture. Chair: Brian Rappert (University of Exeter).
- 9:00 Niccolò Tempini (University of Exeter): Till data do us part: Understanding data-based value creation in data-intensive infrastructures. [Slides: pdf]
- 9:40 Javier Lezaun (University of Oxford): From free data to public data: Applying open-source principles to medicinal chemistry.
10:20 Coffee break
10:50 Session 4 (continued).
- 10:50 Mary Ebeling: Distributed phantoms: The life journeys of biodata commodities.
- 11:30 Sally Wyatt (University of Maastricht): The moral and economic value of openness. [Slides: pdf]
12:10 General discussion + wrap-up. Chair: Sabina Leonelli.
2:30 Closing time
All tweets relating to the conference can be seen below, or here as a standalone webpage.
We would like to thank Chee Wong for her invaluable support in organizing this event and taking care of a lot of details. And thanks to our colleagues at Egenis for support and inspiration.
This workshop is part of a series sponsored by the European Research Council through the project The Epistemology of Data-Intensive Science, led by Sabina Leonelli and hosted by the Exeter Centre for the Study of the Life Sciences (Egenis).