Rethinking Informed Consent in Bioethics
Neil C. Manson, Onora O'Neill
This is a very good critique of the rationale for and present practice of using informed consent in research and clinical practice. To some extent, this book is a sequel to O'Neill's prior work on bioethics. In her Autonomy and Trust in Bioethics, O'Neill presented a very effective critique of the reliance on the concept of autonomy and the nature of the concept of autonomy used in clinical and research ethics. O'Neill argued well that the reliance on the principle of autonomy was poorly formulated and contributed to erosion of trust. In the present book, O'Neill and Manson provide an effective critique of the conventional informed consent approach and present a conceptual alternative. Manson and O'Neill argue that the present informed consent doctrine exhibits a misplaced emphasis on autonomy, is practically difficult, and leads to neglect of ethically necessary aspects of communication between physicians/researchers and patients/participants. They suggest that the present model is based on a "container" approach to delivering information that has major defects. Manson and O'Neill present a model of informed consent based on a "waiver" of specific obligations and rights and an "agency" model of the consent process which tries to stress the full spectrum of requirements for effective communication. This model is extended to some related issues like data privacy and genetic issues in a rigorous way that produces recommendations at variance with present practice. Manson's and O'Neill's critique is carefully developed and convincing. The major drawback of this book is that it is theoretically strong but the authors' suggestions for concrete changes are quite modest. Regardless, the arguments developed in this book are much more rigorous and well founded than those found in the great majority of the bioethics literature.
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