Respect for research subjects: Reality or rhetoric?
Amy Lynn McGuire
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The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) identified respect for persons as one of three fundamental ethical principles for research in its Belmont Report in 1979. Since then, the moral obligation to respect research subjects has been interpreted primarily in terms of respect for individual autonomy. It is my thesis that respect for research subjects requires more than simply respecting subjects’ autonomy. This dissertation examines the ethics of respect for research subjects from a historical, conceptual, and policy perspective. The purpose of this dissertation is to rehabilitate the concept of respect in research ethics and policy and to begin a meaningful dialogue about the ethics of respect for research subjects. \r\n I begin with a historical analysis of research ethics, focusing on the history of disrespect for research subjects. I argue that the National Commission was responding to this history of disrespect when it identified respect for persons as a guiding ethical principle for research. Despite the effort of several commissioners to develop a more robust notion of respect, I contend that the language used in the National Commission’s Belmont Report left an impoverished impression of what is required to respect research subjects. This has permeated the subsequent bioethics literature and has misinformed the ethics and policy of research.\r\n This dissertation calls for reflective dialogue about the ethical duty of respect in the context of human subjects research. I seek to initiate the conversation by developing a multidimensional account of respect as an overarching normative categorty for research. I use the work of several prominent bioethicists who have struggled to gain a deeper appreciation of what it means to respect others as a foundation for a broader conceptualization of respect for research subjects. Finally, I examine several policy implications of taking respect seriously in the context of human subjects research and propose three recommendations for how a more robust interpretation of the ethical duty of respect can inform research ethics and policy.