The Concordant Space of Biomedical Science: How Individuals with Parkinson’s Disease Synchronize themselves with Clinical Trials

Parkinson’s disease (PD) becomes more frequent as populations grow older in western countries. Levodopa exists as medication, but is connected with side-effects. In search for an alternative therapy, patients become agents in different ways. The role as participant in clinical trials, not least, is one of these possibilities for lay influence in scientific matters. In this presentation we ask how one, as patient, relates to clinical science. How does one move along towards what, on the basis of one’s degenerative illness, one perceives as the progress of science? Individuals with PD are, in this sense, temporal beings in whatever they do or calculate in relation to science. This article, based on an ethnographic fieldwork within the frames of a biomedical research project on cell transplantations, explores two different concepts – concordance and synchronizing – in terms of their analytical potential for understanding how research patients participate in clinical trials

The Concordant Space of Biomedical Science: How Individuals with Parkinson’s Disease Synchronize themselves with Clinical Trials

Parkinson’s disease (PD) becomes more frequent as populations grow older in western countries. Levodopa exists as medication, but is connected with side-effects. In search for an alternative therapy, patients become agents in different ways. The role as participant in clinical trials, not least, is one of these possibilities for lay influence in scientific matters. In this presentation we ask how one, as patient, relates to clinical science. How does one move along towards what, on the basis of one’s degenerative illness, one perceives as the progress of science? Individuals with PD are, in this sense, temporal beings in whatever they do or calculate in relation to science. This article, based on an ethnographic fieldwork within the frames of a biomedical research project on cell transplantations, explores two different concepts – concordance and synchronizing – in terms of their analytical potential for understanding how research patients participate in clinical trials

Patientens kropp: Känslor, makt och reciprocitet i transplantationsvärlden

The Body of the Patient Emotions, power and reciprocity in the world of transplantation   Markus Idvall   Transplantation has been a part of human culture and imagination over centuries. In modern times, from the mid-20th century on, transplantation of solid organs and cells has become part of clinical practice. In this article, I focus on field studies with 1) individuals who have donated a kidney to a relative (living donors) and 2) individuals who have received a kidney from a deceased donor. Transplantation is problematized as a form of inter-corporality and a performative meeting between a recipient, a donor and medical intermediaries in the shape of doctors and nurses. By focusing on the body of the patient we learn about the aspects of emotions, power, and reciprocity in which the transplantation takes place. The empirical discussion starts with a phenomenological approach towards what it means to have a transplant. In the narrative of one of the interview subjects a specific landscape – a forest – appears as a symbol for the individual body’s transformation or even “rebirth”. The embodiment of the forest signifies both hope and an uncertain future for the individual. In a similar way, individuals who donate one of their kidneys to a relative, also incorporate the patient’s room in the hospital as being a space representing the pain which an individual living donor experiences when temporarily becoming a patient. In the second part of the article, a bio-political, power-related perspective is included in the analysis. The medical gaze that identifies donors and recipients is discussed in relation to how the human body and body-parts become a form of a national resource in the transplant context. Donor pools and waiting lists for transplants are in this respect tools for realizing a transplant industry on a national and global basis. At the end of the article, reciprocity is introduced as an analytical perspective. By distinguishing the transplant as a gift, emotions, power relations and the multifaceted body of the patient can be seen as inter-connected

Forum för humanistisk-samhällsvetenskaplig hälsoforskning: Forskarkonferens kring temat Program och praktik

Med temat program och praktik vill vi särskilt uppmana forskare att reflektera över vad som sägs och vad som görs inom hälso-, medicin- och sjukdomsrelaterade verksamheter, såväl i nutid som i det förflutna. Med program avses till exempel vårdpolitiska uttalanden och viljeyttringar av olika slag, beskrivningar eller bilder av hur t.ex. vård och omhändertagande bör vara beskaffad, läroböckers beskrivningar av önskvärda metoder, vårdformer, omhändertaganden, ingrepp etc., eller andra sorters vägledande utsagor, bl.a. i massmedia, som anger hur något bör vara beskaffat, ska utföras eller på annat sätt riktas mot en önskvärd omsättning i handling. Med praktik menas t.ex. handlingar, handgrepp och genomförande, tysta eller fotade i något slags program. Här ingår också upplevda och beskrivna relationer mellan t.ex. vårdtagare, klient eller kund och olika vårdgivare eller producenter av vård, behandling och omhändertagande eller andra aktiviteter, rum eller materiella alt. immateriella produkter inom medicin- och hälsofältet. Konferensen vill gärna att deltagarna reflekterar över dessa två begrepp, vart och ett eller i relation till varandra i empiriskt, metodologiskt, källkritiskt eller annat avseende. Konferensen välkomnar också bidrag om de epistemologiska, etiska och representationsteoretiska perspektiv och paradigm som ligger bakom, uttrycks genom eller utesluts från sådana program och praktiker som angivits ovan