Critical Studies of Citizen Science in Biomedical Research

2 March 2017

King’s College London (Strand Campus)


Organizers : Alena Buyx, Barbara Prainsack, Sabina Leonelli, Bruno J. Strasser, Dana Mahr, Lorenzo del Savio

In biomedicine, initiatives subsumed under the heading of “citizen science” are highly diverse, ranging from projects run by academic institutions to private companies, patient associations, or individual citizens. They generally involve “lay people” collecting or analysing large and diverse datasets. Some initiatives are designed to obtain data about the user, or to encourage volunteers to produce data. This development coincides with increasing attention to participatory processes and “patient empowerment” in medicine more broadly, without which – as some policy makers explicitly state – healthcare systems will not be sustainable.

Despite the great variety in the meanings and uses citizen science, is not without precedents. So-called “amateurs” have long made substantive contributions the creation of scientific and medical knowledge. What, then, explains the large amount of attention that citizen science, as a concept and as a phenomenon, has received since the end of the 20th century, and what are its effects, as well as social and ethical implications?

This one-day conference organised by three different projects concerned with citizen science in Exeter (S. Leonelli), Geneva (B. Strasser), Kiel (A. Buyx), and London (B. Prainsack), will take a critical look at the role of citizen science in biomedical research in the 21st century, considering a wide variety of perspectives.

The event is free, but registration is required.

To register, please send an email with your details to medizinethik@iem.uni-kiel.de

register

Programme

9:00-9:45 Welcome and presentation
Alena Buyx & Barbara Prainsack
University of Kiel and King’s College, London
Citizen Science in Biomedicine – Mapping the field

9:45-10:15 Ilaria Galasso, Giuseppe Testa
Istituto Europeo di Oncologia, Universita’ di Milano
Citizen Science in Precision Medicine: a Route to Democracy in Health?

10:15-10:45 Giulia Frezza, Mauro Capocci
Universität’ La Sapienza di Roma
Health in the Factory. The historical roots of Italian citizen science

10:45-11:15 Coffee Break

11:15-11:45 Vanessa Heggie
University of Birmingham
Doing Science where there are no Citizens: lay participation in biomedical Antarctic science c. 1880-1980

11:45-12:15 Javier Lezaun
University of Oxford
Open-Sourcing Pharma: The Case of Antimalarial Drug Discovery

12:15-12:45 Bruno J. Strasser & Dana Mahr
University of Geneva
Our Digital Bodies, Our Digital Selves?

12:45 – 13:45 Lunch

13:45-14:15 Sabina Leonelli & Niccolò Tempini
University of Exeter
Using Citizen Data Beyond “Citizen Science”

14:15-14:45 Staffan Müller-Wille
University of Exeter
Citizen Science avant la lettre

14:45-15:15 Rosen Bogdanov, Eduard Aibar
Universität Oberta de Catalunya
Do–It–Yourself Biology as Citizen Science: Taking Participation a Step Further

15:15-15:45 Nils Heyen
Fraunhofer Institute for Systems and Innovation Research ISI
Quantified Self as Personal (Citizen) Science

15:45-16:15 Megan Clinch, Richard Ashcroft, Sara Shaw, Deborah Swinglehurst
Queen Mary University of London, University of Oxford
Collaboration not corroboration: producing and posing relevant life science questions

16:15-16:45 Coffee break

16:45-18:00 Keynote: Barbara Evans
University of Houston

King’s College London, Strand Campus