Citizen science: búsqueda de contactos en España
David Teira
Un colega está buscando casos españoles para poder incorporarlos al proyecto que os copio debajo. Si tuvierais alguna información, podéis contactarle directamente aquí:
| Lorenzo Del Savio <lorenzo...@gmail.com> |
Mil gracias
David
Social, ethical and regulatory aspects of citizen science in biomedicine and health care
The participation of ‘the public’ in science has been a long-standing concern in science and technology studies and the social studies of biomedicine. However, the first wave of theory and practice of ‘citizen science’ (CS) -- centered on the need of increased collaboration between scientists and laypeople -- is now being flanked by participatory initiatives where laypeople directly carry out pieces of research that were traditionally reserved for experts. In some cases, data collection for large epidemiological studies, for epidemics surveillance or for clinical trials is being devolved to ‘the crowd’, while the control of the project remains firmly in the hands of traditional research institutions. In other cases, community driven peer-to-peer science is emerging, where laypeople and experts -- often transgressing disciplinary divisions -- are challenging the established division of cognitive labour and the boundaries of traditional research institutions.
Political, technological and social changes underlie this new wave of CS (Delfanti 2010). The political charisma of appeals to citizen participation in elite activities continues to motivate CS. Technical and legal infrastructures -- and especially web-based platforms and social networks -- are propelling the birth of online communities around data collection or analysis. The spread of ‘crowdsourcing’, maker cultures, and the open-access movement are closely linked to these developments. Moreover, some factors could possibly be specific to biomedicine, and especially the rise of data-intensive/data-driven research and the activism of patient advocacy groups, which may increase with the epidemiological significance of chronic diseases.
Our project, which is funded by the German Federal Ministry of Education and Research, will map the terrain of citizen science in biomedicine beyond the most prominent and well-researched cases, as PatientsLikeMe, Curetogether and 23andMe platforms. The aim of the project is to provide a global overview of CS in biomedicine, tracking its origins, developments and social impact. This effort will be partly normative: we will ask whether CS produces better knowledge than traditional science, and how ‘better’ can be defined in the first place. CS promises to increase the speed, decrease the cost, augment the social robustness and responsivness to public preferences of traditional research. It is important to ask whether and why CS could fulfill these promises. We will also look at ethical issues pertaining the involvement of citizens in research, their control on the scientific results of CS and their commercial use, and scenarios of exploitation. We will also pay particular attention to whether and how existing ethical frameworks, regulation and policy shall adapt to and constrain CS.
Prof. Dr. Alena Buyx (Universitätsklinkum Schleswig-Holstein; Institute fϋr experimentelle Medizin) and Prof. Barbara Prainsack (King’s College; SSHM) coordinate the project, which is funded. It includes a postdoc fellowship, held by Dr Lorenzo Del Savio (UKSH).
The first phase of the project is now starting and surveying various initiatives around Europe. He would like to research some cases beyond UK and Northern Europe, so he was wondering whether you are aware of people and teams that may be contacted in Spain and are conducting similar initiatives.