'As long as it helps somebody': why vulnerable people participate in research.
In the past, ethics committees and researchers have avoided research among vulnerable groups because of prevailing perceptions that such research is unethical and difficult. Taking an opposite stand, this article will argue that it is in fact unethical not to research vulnerable populations because, by excluding potential participants from research endeavours, they are being deprived of the benefits to be gained from research. Albeit well meaning, people in vulnerable populations are also being subjected to the paternalistic attitudes of those who believe they know what is in the best interests of others. There is ample evidence in existing literature that, not only is research among vulnerable populations unlikely to result in harm, but there are often benefits to be gained by both participants and researchers. Apart from the generic benefits of increased knowledge and improved health interventions, specific benefits for participants might be: therapeutic, cathartic, educational, empowering, altruistic and social. In contrast, the risks associated with researching vulnerable populations appear to be minimal. Yet, there is still evidence that health care professionals and other gatekeepers continue to hinder research amongst vulnerable populations through unilateral decision-making. This article will review existing literature on the topic of research amongst vulnerable populations, as well as contribute to the argument from the author's own study on a sensitive topic.
Alexander
Susan Jane
SJ
CQ University, Bundaberg, Queensland, Australia. s.alexander@cqu.edu.au
D026686:Beneficence; D032984:Ethics, Research; D006801:Humans; D009042:Motivation; D010166:Palliative Care; D018579:Patient Selection / Q000941:ethics*; D012306:Risk; D035862:Vulnerable Populations