Hidden Data for Research Ethicists: An Introduction to the Concept and a Series of Papers

Abstract

THIS SPECIAL SECTION OF THE Journal of Empirical Research on Human Research Ethics (JERHRE) is based upon the assumption that much of the best empirical data relevant to research ethics is hidden from the view of Research Ethics Committee (REC) members and others who are interested in research ethics. There are at least three different senses in which ethics-relevant empirical research may be hidden: (1) it may be published in a journal that ethics committee members would not regularly read, (2) it may not use key words that would guide one to its ethics-relevant content, or (3) it may be sequestered in part of a research article that is about something else. This special section of JERHRE reviews all of these types of "hidden ethics" articles on the following issues: What is the relative frequency of hidden ethics articles in journals that focus on vulnerable populations? What does the non-ethics literature in clinical research and experimental economic decision theory teach us about ways of improving subjects' comprehension of risk information? How satisfied are parents and children with their experience with pediatric psychotrophic medication trials? And, how can retention rates be improved in longitudinal studies of difficult regimens such as drug rehabilitation? There is a major amount of ethics-relevant literature that is hidden. Without better ways of communicating the existence of this literature through use of key words, or recasting of the information to highlight its relevance to research ethics in journals that ethics committee members read, the benefits of evidence-based ethical problem solving will be lost.