Subject Perspectives

This chapter describes a serious omission in research ethics and oversight. Regulations and guidelines governing human subject research were largely created by professionals. Although members of the general public are sometimes included in research ethics deliberations, they play a minor role. Strikingly, people who know what it is like to be a research subject are rarely part of these activities. Personal experience as a study subject produces knowledge relevant to research ethics and policy. Professionals and public representatives often assume they are representing subjects’ perspectives without having a solid evidentiary basis for this assumption. Scholarship in a variety of fields supports the inclusion of experienced research subjects in ethical and policy decision-making. Experienced subjects’ perspectives on research have been neglected for too long. Progress in research ethics and oversight will require deeper engagement with the individuals who personally experience study participation.