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Ethical Review Boards are poor advocates for patient perspectives
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research. (Hälso- och sjukvårdsforskning)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
University of Copenhagen. (Dept. of Pharmacy, Social and Clinical Pharmacy)
2014 (English)In: Research Ethics, ISSN 1747-0161, E-ISSN 2047-6094, Vol. 10, no 3, 169-181 p.Article in journal (Refereed) Published
Abstract [en]

In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards (ERB), as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire was developed and sent to patient members of the Swedish Rheumatism Association (n = 1195) and to all ERB board members in Sweden (N = 583). Response rates were 65 percent and the surveys were conducted in Jan−May 2011. Agreement across the groups included priority for medical research on diagnostic and early detection of disease. A key difference was expert and lay ERB members giving higher priority to basic research/research on lifestyle and prevention (primarily benefiting future patients), whereas patients prioritized research on daily function. On this significant point, lay members did not share the opinion of this patient group, indicating that they may be poor representatives for patients’ views. These results call for further research: how can patient perspectives be included in ERB discussions and in what way should patients’ values influence the research agenda.

Place, publisher, year, edition, pages
2014. Vol. 10, no 3, 169-181 p.
National Category
Ethics
Research subject
Bioethics
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URN: urn:nbn:se:uu:diva-206842DOI: 10.1177/1747016113508948OAI: oai:DiVA.org:uu-206842DiVA: diva2:645645
Available from: 2013-09-05 Created: 2013-09-05 Last updated: 2017-12-06Bibliographically approved

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Masterton, MalinRenberg, TobiasHansson, Mats G

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