The Prescription for Flourishing Embodiment in Public Bioethics

December 4, 2020 • Posted in Blog

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A Book Review

C. Ben Mitchell, Ph.D.
Distinguished Fellow

American public bioethics does not have a sterling history because it misunderstands its most important subject, the human subject. This is the claim of a brilliant new book by O. Carter Snead, the Director of the de Nicola Center for Ethics and Culture and professor of Political Science at the University of Notre Dame.

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In What it Means to be Human: The Case for the Body in Public Bioethics (Harvard, 2020), Snead offers a genealogy of American public bioethics. Public bioethics, as contrasted with clinical bioethics, is the realm of human subjects research where, instead of focusing on a patient’s health, “the researcher seeks generalizable knowledge through the rigorous and systematic application of the scientific method” (p. 15). Historically, American public bioethics begins after the atrocities of Nuremberg were discovered, revealing just how so-called science can violate vulnerable people. In response to the Nuremberg Doctor’s Trial the American Medical Association adopted its first ethical code aimed at protecting human subjects in research, “Principles of Ethics Concerning Human Beings” (1946).

As Snead shows so poignantly, the gestation period of American public bioethics was quite traumatic. He chronicles “three signal moments” in that history at the beginning of the book: Henry K. Beecher’s landmark 1966 New England Journal of Medicine article, “Ethics and Clinical Research”; the Tuskegee syphilis experiments; and the National Institutes of Health research on just-aborted, ex utero, but still-living infants, funded by U.S. tax dollars. In each set of cases human patients were treated as little more—sometimes less—than guinea pigs. These contractions resulted in the birth of what Snead is calling American public bioethics when Richard Nixon signed The National Research Act in the summer of 1974 and, more significantly, with that act established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.

If it were a fairy tale we would think that everyone lived happily ever after. But American life is anything but a fairy tale. As Snead walks us through the highlights of the history of human subjects research from 1974 to the present we can see vividly with him the central problem of American public bioethics. The reason American public bioethics has failed to adequately protect human subjects is because of our faulty view of human subjects themselves. We have a faulty anthropology, an anemic view of what it means to be human. If one is unable to understand what it means to be human, then humans are unlikely to be treated humanely. So, argues Snead, we need an “anthropological corrective” (p. 13).

If the first section of the book is genealogical, the next section is anatomical. That is, Snead skillfully dissects the flawed anthropology of contemporary American culture. In sum, our anthropology is radically dualistic, ignoring our embodiment and focusing almost exclusively on the human as an atomistic willing thing. This view of what it means to be human is called expressive individualism. As Snead puts it, “the self is bound only to those commitments freely assumed. And the expressive individual self only accepts commitments that facilitate the overarching goal of pursuing its own, original, unique, and freely chosen quest for meaning” (p. 87). “It’s vision of the human person,” he goes on to say, “does not reflect and thus cannot make sense of the full lived reality of human embodiment, with all that it entails . . . human beings experience themselves and one another as living bodies, not disembodied wills” (p. 88, emphasis original).

  Because human beings live and negotiate the world as bodies, they are necessarily subject to vulnerability, dependence, and finitude common to all living beings, with all of the attendant challenges and gifts that follow. Thus, the anthropology of the atomized, unencumbered, inward-directed self of expressive individualism falls short because it cannot render intelligible either the core human realities of embodiment or recognize the unchosen debts that accrue to all human beings throughout their life spans. (Ibid., emphasis original).

In a manner reminiscent of C. S. Lewis’s famous dialogue between two devils about how to get human beings to do their bidding, American public bioethics and expressive individualism colluded to elevate “patient autonomy” over every other good in medicine, research, and biotechnology. Because in American public bioethics patients are stripped of their embodied selves and distilled to disembodied wills, those human beings among us who cannot exercise their wills (the unborn, cognitively disabled, and near dead) are the most vulnerable to abuse. So the next half of the book details how this defective anthropology of disembodied expressive individualism informs the ethics, law, and policy of abortion, assisted reproduction, and death and dying.

The primary purpose of both law and medicine, including human subjects research, should be to protect and promote human flourishing. Since it is human flourishing, we must get the anthropology right. Snead says it best himself:

  Thus, both for our basic survival and to realize our potential, we need to care for one another. We need robust and expansive networks of uncalculated giving and graceful receiving populated by people who make the good of others their own good, without demand for or expectation of recompense. The goods and practices necessary to the creation and maintenance of these networks are the virtues of just generosity, hospitality, and accompaniment in suffering (misericordia), as well as gratitude, humility, openness to the unbidden, tolerance of imperfection, solidarity, respect for intrinsic equal dignity, honesty, and cultivation of moral imagination. Viewed through the lens of the anthropology of embodiment, all living members of the human family are worthy of care and protection, regardless of age, disability, cognitive capacity, dependence, and most of all, regardless of the opinions of others. Everyone can participate in the network of giving and receiving, even if only as the passive recipients of unconditional love and concern. There are not pre- or post-personal human beings in the anthropology of embodiment. (p. 269–70)

 

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The Tennessee Center for Bioethics & Culture encourages respectful discussion and debate of bioethics issues, and strongly supports freedom of speech. To that end, we invite and welcome other voices to the discussion of bioethics issues. Invited authors’ views are their own, and do not necessarily represent those of The Tennessee Center for Bioethics & Culture.