- IRB: ETHICS & HUMAN RESEARCH
Experimentation without Representation
Although study subjects are often called partners in research, they actually have very little power in the research world. This ought to change. Subjects are the only people who know what it is like to interpret research disclosures, deal with the burdens and inconveniences of study participation, and juggle research participation responsibilities with the demands of everyday life. Research decisions that rely on subject input will be ethically and practically superior to those that rely on speculation about such matters. Experienced subjects should be appointed to institutional review boards, as well as to committees developing research ethics and policy recommendations. Research policies and practices should take subjects’ perspectives into account. Community engagement, patient-centered research, and similar approaches should recognize the special status of people with real research experience and act to ensure that experienced participants are part of the process.
Key words: clinical trials, human research subjects, institutional review boards, engaging research subjects, research subjects as partners