Good Citizens: Citizen's Participation in Biomedical Research Biobanks

Monday, 11 July 2016
Location: Hörsaal 32 (Main Building)
Distributed Paper
Brigida RISO, CIES-University Institute of Lisbon, Portugal
Biobanks have been developing more intensively after the Human Genome Project. In some countries, national biobanks were established over a particular idea of nation. Massive citizen’s recruitment took place, claiming citizenship duties to help the national biomedical research, thus contributing to (re)construct a biological idea of nationhood. As good citizens, individuals “should” give their samples for the benefit of the whole nation. Besides, individuals willing to give samples often referred helping others and participating in a better future for their children and for humanity as personal reasons to motivate the donation.

In other cases, recruiting and collecting samples for biomedical research purposes is subtler. For ages, many doctors have established their own collections through their medical practice. During medical appointments, patients were invited to give samples - which is still a current practice. In Portugal, according to the law, the storage of a sample could only be requested by medical doctors, which enforces medical power. Although the medical profession has a central position, I argue that the varying symbolic value of each sample shapes the doctor-donor relationship – the way medical authority is performed is different when the individual has interesting samples to provide.

Citizens worldwide are actively participating defining the path of research, integrating decision boards, or through digital technologies. However, as there is no formal way to directly participate in decision-making in Portugal, joining patients association could be regarded as an effort to influence research by the available means.

This research aims to discuss how health and illness are being conceptualised in a changing health context still marked by the powerful medical authority of recent past. An ethnographic study is being conducted in a Portuguese biobank, in order to enlighten how these relationships between health professionals and donors are creating and redefining new modes of citizen participation.