Ethical review boards are poor advocates for patient perspectives:

Research Ethics

MalinMasterton¹ 

关键词: ethical review boards;    layman;    patient interest;    priorities in medical research;    research partner;   

DOI  :  10.1177/1747016113508948

学科分类：医学（综合）

来源: Sage Journals

【 摘 要 】

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 ...

【 授权许可】

CC BY