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from Part III - Beyond Autonomy: Turning to the Community to Protect the Individual
Published online by Cambridge University Press: 20 September 2019
Clinical medicine is heavily reliant upon the results of high-quality research, conducted to exacting ethical standards. Efforts to ensure such standards include the development of national and international research ethics guidelines together with the establishment of review systems such as research ethics committees (RECs, also known as institutional review boards or IRBs). A major focus of these efforts has been on protecting the autonomy of participants, primarily through the process of detailed informed consent. Gaining well-informed consent from prospective participants limits the potential for individuals to be subjected unknowingly or unwillingly to experimentation and, when well done, supports individuals to make free choices about their research participation. However, informed consent is not a universal panacea as there are various ethical breaches in research against which informed consent is relatively powerless. My focus is on one such breach – that of data misuse.
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