Good Citizens: Citizen's Participation in Biomedical Research Biobanks
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.