Scientific communicator at Catalan Institute of Nanoscience and Nanotechnology (ICN2)
‘How democratic should science be?’ was the question that opened the first SciDF’s public event. In the evening of the 26th October, around 30 people meet in Flatherty’s Irish Pub (Barcelona) to discuss the participation of society in science while having a beer.
Yoran Beldengrün, president of SciDF, introduced the format of the event: first, round table with some experts; second, case-studies in small groups; finally, group conclusions. We enjoyed the presence of two specialists in the field of the democratisation of science. They were Miquel Domènech, senior lecturer in Social Psychology at the Autonomous University of Barcelona, and Imma Grau, director of iSYS Foundation. Marina Torres, science communicator at CREAF, was also expected, but had to call in sick, unfortunately.
The round table discussion orbited around the relation between science and society, including whether society should participate in scientific decision or what its role actually is. Through health examples and experiences, the speakers pictured a complex image of science.
Imma Grau told the story of Xemio, an application created for breast cancer patients that enables the registration of side effects, additional commentaries and other information that academic studies usually do not take into account. The application aims to collect all the possible information and allows the democratisation of science by making people active in the research against cancer.
Miquel Domènech talked about—and criticised—the way most researchers investigate. ‘We do science for the people, not just to go to congresses’ he said. ‘The only way to know if the advancements in science work well is to talk to society. The fact that ones are categorised as experts and the others are not, does not impede communication, or it should not’.
After the roundtable, the attendees split into two groups. The group led by Imma Grau focused on the privacy and accessibility of medical records. The participants agreed that patients should be well-informed and have the last word about their records for clinical trials. Conversely, the regular health system should allow the sharing of records between doctors and institutions in order to provide a better diagnosis.
The group of Miquel Domènec discussed Lorenzo’s oil, a film based on the true story of a 5 year-old who suffered from a rare disease, which lead the doctors to neglect his case, but the determination of his parents helped to find a way through. The debate concluded that all the involved parties (i.e. patients, doctors, pharmaceutical companies, research institutions) act on their needs and beliefs and sometimes forget the human component.
So, how democratic should science be? This question is difficult to answer due to its generality. At the event, all discussions were about health science. And reducing science to health examples may drive into inaccuracies. Thus, maybe the correct question would be: How democratic should health science be? Health science should be made for the people as knowledge per se has no value in a world with needs to be covered. The European Union already requires research projects to have an application. On the other hand, the participation of citizens might fill in the gaps of some studies or help find a direction that was not even considered before.