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Race, Religion, and Informed Consent — Lessons from Social Science

Published online by Cambridge University Press:  01 January 2021

Extract

Patients belonging to ethnic, racial, and religious minorities have been all but excluded from the legal academy’s ongoing conversation about informed consent. Perhaps this is just as well, since the conversation appears to have concluded that the doctrine has failed to serve as a meaningful regulation of clinical relationships. Informed consent does not operate in practice the way it was intended in theory. More than a decade ago, Peter Schuck noted the “informed consent gap” that distinguishes the “proper” law of informed consent “on the books” from the actual consent law in action, and called for a more contextualized approach to informed consent. Susan Wolf later called for a systemic approach to informed consent in order to accommodate multiple decision points in the managed care setting. Some reformers have sought enhancements to expand the doctrine.

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Copyright © American Society of Law, Medicine and Ethics 2008

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It is outside the scope of this paper to explore the variety of ethical systems that exist to inform the overall field of bioethics, and medical ethics in particular, except to the extent that these ethical systems derive from particular cultural, ethnic and religious minorities used as exemplars herein. Therefore, whether one chooses a utilitarian or consequentialist approach to ethical theory and seeks to maximize good while minimizing harm; or whether one adopts a deontological view of duty and obligation; or whether the more modern approaches such as liberal individualism or case-specific approach of casuistry is most appealing, where the question of informed consent is concerned, the fundamental problem of identifying a common moral system is solved in this paper by relying on the substantial consensus that bioethicists have achieved around three fundamental principles approach to bioethics. The principles of justice, beneficence and autonomy, identified in The Belmont Report of the National Commission for the Protecting of Human Subjects of Biomedical and Behavioral Research (1974–1978) represent a consensus foundational to a common theory of medical ethics. In November 1979, The Belmont Report was published in the Federal Register, available at <http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.htm> and to this day articulates the unifying ethical principles which underlie human subject research and clinical ethics today. See, 45 C.F.R. Pt. 46. While principlism, as this ethical theory has come to be called, is not without its critics (see, e.g., Arras, J. D., “Principles and Particularity: The Roles of Cases in Bioethics,” Indiana Law Journal 69 (1994): 9831014, at 991) few would disagree that these three values, applied to clinical and research medicine, constitute the core of Western bioethical theory.Google Scholar
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There are a host of reasons why this may be true. Perhaps women are represented in the reported cases disproportionately because only the most egregious informed consent fact patterns are tried and women are more often victims of individual rights’ violations. Alternatively, perhaps women are the primary consumers of certain types of health care and those providers are more often open to negligence claims due to the nature of their practices. The list of possible explanations is long. And to hazard a guess without further study of these cases, the types of consent cases women bring, the actual incidence of their success and failure, and other empirical data, little more can be said at this juncture.Google Scholar
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In the section that follows, I argue that the fiduciary model, in fact, is preferable.Google Scholar
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