Transparency versus Informed Consent: The Patient/Consumer Paradigms
chapter in TRANSPARENCY IN HEALTH AND HEALTH CARE (Barbara Evans et al, eds., Cambridge Univ. Press, 2019)
21 Pages Posted: 21 May 2020 Last revised: 28 May 2020
Date Written: May 20, 2019
Before transparency became the buzzword in bioethics and health policy that it is today, it was somewhat parasitic on another familiar concept: that of informed consent. In 1989, Howard Brody offered what has come to be known as the “transparency model” of informed consent. In his elaboration of the model, Brody argued that the key to informed consent was making the treatment process legible to the patient. Transparency remained part of the informed consent process in both academic and policy circles. A decade after Brody, Bill Sage observed that “disclosure obligations have been imposed by courts” in part to help vindicate “informed consent by physicians.” The seminal 2001 report from the Institute of Medicine, “Crossing the Quality Chasm: A New Health System for the 21st Century” similarly observed, “Transparency is necessary [to] make available to patients and their families information that enables them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments.”
This chapter seeks to make three predominantly descriptive-evaluative (rather than prescriptive) points. The first claim, which I engage with in the most detail, is that informed consent and transparency – at least as the term is widely used today – are tethered to different narrative and ethical paradigms. Informed consent implicates the traditional model of the care-recipient as patient. Transparency implicates a newer model of the care-recipient as consumer. These narratives correspond to different ethical frameworks and to different contexts. The former better corresponds to a vision of autonomy where the individual is rendered autonomous through the relationship she builds with others. Transparency, by contrast, is more consonant with an absolutist, Kantian sense of autonomy, which takes the individual as a developed decision maker that merely needs data in order to compute the correct outcome.
Second, the paradigms separate the contexts that constitute the health-care system. Health care involves various contexts and social roles. These include traditional clinical contexts in which patients interact with their doctors. But they also include interactions that do not traditionally fall within this category such as shopping for elective procedures, medical supplements, or insurance. Informed consent can be understood as a ritual that tells the actors within the health system which social role they are occupying. Maintaining some degree of separation between our understanding of the practices helps maintain sickness and medical care as contextually distinct areas of human interaction. This separation serves important social functions by determining, for example, when individuals are entitled to care and social support, and when they are not.
Finally, the discourse someone deploys – transparency or informed consent – demonstrates their own normative priors as to whether a particular activity should be considered consumerist or medical in nature. My own take is that transparency is the appropriate framework, for example, when an individual is choosing a primary care doctor for a routine checkup. Informed consent is appropriate when the patient is choosing a treatment plan. But those who advocate transparency versus informed consent with respect to certain activities are essentially arguing about what paradigm is appropriate and where the boundary between medicine and nonmedicine should be drawn.
Keywords: Consumer protection, transparency, informed consent
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