Excerpt: “The laws, regulations and ethical guidelines governing human subject research were largely created by professionals. Researchers, physicians, philosophers and lawyers have been the primary advisers in legislative and regulatory proceedings on human research rules. Individuals appointed to governmental and other groups developing and applying research ethics standards are almost always professionals. Although members of the general public are sometimes included in research ethics deliberations, they play a minor role. Strikingly, the people who actually know what it is like to be a research subject are rarely part of these activities. Few people with direct experience as research subjects have been involved in the creation and application of human research rules and guidelines. I believe that their lack of involvement has lessened the effectiveness and ethical value of those rules and guidelines. This is because professionals addressing research ethics and oversight have experiences and interests that differ from those of research participants. Professionals conducting research have perspectives related to their research roles, perspectives that can shape their perceptions and judgements. What one writer has called “researcher ethnocentrism” can prevent investigators from seeing ethical problems with the design and conduct of human studies”
Dresser R (2015) Research subjects’ voices: the missing element in research ethics. Anaesth Intensive Care 43(3), 289-432.