What It Means to Be Human

O. Carter Snead

• Publisher: Harvard University Press
• Year: 2020
• ISBN:
  9780674250772
• Topic: Law
• Subtopic: Ethics & Professional Responsibility in Law
• Index: Law

A Wall Street Journal Top Ten Book of the Year
A First Things Books for Christmas Selection
Winner of the Expanded Reason Award "This important work of moral philosophy argues that we are, first and foremost, embodied beings, and that public policy must recognize the limits and gifts that this entails."
— Wall Street Journal The natural limits of the human body make us vulnerable and dependent on others. Yet law and policy concerning biomedical research and the practice of medicine frequently disregard these stubborn facts. What It Means to Be Human makes the case for a new paradigm, one that better reflects the gifts and challenges of being human.O. Carter Snead proposes a framework for public bioethics rooted in a vision of human identity and flourishing that supports those who are profoundly vulnerable and dependent—children, the disabled, and the elderly. He addresses three complex public matters: abortion, assisted reproductive technology, and end-of-life decisions. Avoiding typical dichotomies of conservative-liberal and secular-religious, Snead recasts debates within his framework of embodiment and dependence. He concludes that if the law is built on premises that reflect our lived experience, it will provide support for the vulnerable."This remarkable and insightful account of contemporary public bioethics and its individualist assumptions is indispensable reading for anyone with bioethical concerns."
—Alasdair MacIntyre, author of After Virtue "A brilliantly insightful book about how American law has enshrined individual autonomy as the highest moral good…Highly thought-provoking."
—Francis Fukuyama, author of Identity

1

A Genealogy of American Public Bioethics

The core argument of this book is that the normative grounding of American public bioethics is a vision of human identity and flourishing that does not fully reflect the lived reality in which the relevant legal and political issues arise. American law and policy concerning bioethical matters are currently animated by a vision of the person as atomized, solitary, and defined essentially by his capacity to formulate and pursue future plans of his own invention. The “natural” world and even the human body are, by contrast, understood as merely inchoate matter to be harnessed and remade in service of such projects of the will. This incomplete and thus false picture of life as humanly lived makes a very poor foundation for the law and policy of bioethics. The truth is that persons live (and die) as embodied beings, with all the natural limits and great gifts this entails. Thus, the real human context in which the issues of public bioethics emerge is characterized by vulnerability, mutual dependence, and finitude. The asymmetry between the law’s current anthropological premises and the lived reality that it seeks to govern renders American public bioethics incapable of responding wisely, justly, and humanely to many of the pitched vital conflicts that define this domain. Indeed, because of its inadequate vision of human identity and flourishing, the relevant law and policy cannot offer a coherent account of our own vulnerability, dependence, and relationships to vulnerable others, including especially children, the disabled, and the elderly. What is needed, therefore, is an “anthropological” corrective to resolve this asymmetry, and to integrate into public bioethics fitting goods, practices, and virtues suitable to governing a polity of embodied human beings.

To understand why such a corrective is needed and how it might be integrated into law and policy, it is necessary first to explore in some depth the unique field under consideration, namely, American public bioethics. Accordingly, this chapter will set forth a brief thematic historical narrative meant to illuminate the procedural, substantive, and human paradigm of American public bioethics, established at its inception and continuing to the present day. This genealogy will lay a general framework for the more granular inductive anthropological analysis and critique of American public bioethics in the chapters that follow.

WHAT IS PUBLIC BIOETHICS? HISTORY AND HUMAN CONTEXT

The story of American public bioethics is a succession of political and legal reactions to the reported use, abuse, and exploitation of the weakest and most vulnerable members of the human population. It is a history of mutual dependence, neediness, and finitude. It is a story that begins with the practice of human subjects research.

Why did the practice of human subjects research precipitate the crises from which American public bioethics emerged in response? The answer lies in its very definition and purpose, which reveal that despite its importance for the pursuit of health and wholeness, it is a species of activity fraught with potentially profound ethical and personal risks to all involved.

Human subjects “research” is a term defined in federal law as “systematic investigation … designed to develop or contribute to generalizable knowledge.”¹ It is essential for understanding human biological functioning and the mechanisms of action of drugs, devices, and medical interventions that may (or may not) offer safe and efficacious means of preventing or treating diseases and injuries. When directed toward common lethal diseases, such research can save lives. In the face of existential public health threats, human subjects research may save communities or even entire nations. Unsurprisingly, biomedical research thus enjoys widespread public support, and its most prominent practitioners are sometimes rightly hailed as genuine heroes for the common good.

However, the primary goal of this research is not for researchers to care for and cure those who serve as subjects. Instead, researchers use human subjects as tools to evaluate untested interventions or to understand the natural progress of disease without treatment. Often the human subjects involved are profoundly vulnerable—gravely ill and suffering. While both researcher and subject surely hope that the latter will receive a benefit through his participation, this is not the fundamental aim of the endeavor. The goal is to obtain information about the safety and efficacy of possible medical treatments. The human subjects involved are, by design, means and instruments to the development of this knowledge.

Accordingly, the aims and metrics for success are not the same for clinicians and researchers. Clinicians are single-mindedly focused on restoring their patients to health and wholeness. The interests and goals of doctor and patient are thus perfectly aligned, even in the application of experimental therapy. The success of clinical care is measured by healing or, failing that, diminished suffering. By contrast, the researcher seeks generalizable knowledge through the rigorous and systematic application of the scientific method. For the researcher, an experiment definitively showing that an untested medical intervention is ineffective or even dangerous is successful in that it produces useful generalizable knowledge.

The challenge for human subjects researchers is to find a way to conduct this research while remaining faithful to foundational principles of ethics, justice, and human rights that bind us all. They traditionally do so by securing informed consent. Providing such consent allows subjects to freely participate in the research enterprise, knowing and appreciating the risks to life, limb, and the expectations involved. Thus, by the exercise of their own autonomy and self-determination, the human subjects themselves transform the nature of the transaction from objectification to collaboration.

But does this protect human subjects from exploitation and abuse? What about those who are incapable of informed consent because of cognitive impairments resulting from immaturity, disability, low intelligence, or lack of sophistication? What about those subjects whose capacity to consent is impaired by circumstances such as incarceration, serving as soldiers bound to strict rules of obedience and chain of command, or belonging to a community beset by systemic racial injustice? What about those who are so desperate for a cure that their perceptions and understanding are compromised? These are serious questions that emerge in dramatic fashion in the historical narrative of American public bioethics.

Therefore, in its essence, research involving human subjects presents an ethically fraught and volatile human context, rife with potential peril for all involved. Even under the best possible circumstances, research involving human subjects involves management and distribution of serious risks, and the engagement with potentially profound conflicts involving justice, human dignity, freedom, and the common good. At its worst, research involving human subjects can be the occasion for the darkest forms of exploitation, abuse, and deep violence. It is from this crucible that American public bioethics emerged.

Scholars and commentators mark the beginning of American public bioethics in different ways, but there are three signal moments that particularly illustrate how crucial human embodiment is for wise and just governance in this domain. Moreover, these events set in motion a cascade of political and legal responses that laid the foundation for a framework that endures today. The first was the publication by the New England Journal of Medicine of Henry K. Beecher’s “Ethics and Clinical Research,” a 1966 article detailing twenty-two examples of unethical experiments involving human subjects.² The second was the publication on July 25, 1972, of the details of the infamous federal “Tuskegee Study of Untreated Syphilis in the Negro Male” in the Washington Evening Star.³ Third, on April 10, 1973, an article by Victor Cohn published on the front page of the Washington Post reported for the first time on debates at the National Institutes of Health on whether to fund research involving “newly delivered human fetuses—products of abortions—for medical research before they die.”⁴

Each of these three episodes began with a public scandal involving the abuse of vulnerable individuals treated as objects by researchers or clinicians, followed by a governmental response. This response included information gathering and debate with discussion of the moral and legal boundaries of the community, as well as the tensions between scientific progress and respect for the dignity, autonomy, and bodily integrity of marginalized and exploited individuals. The governmental response finally culminated in official action such as passage of a statute, administrative regulations, judicial decision, or issuance of an advisory report. Solutions looked primarily to the ethical goods of autonomy and self-determination as the key safeguards against future abuses.

BEECHER SOUNDS THE ALARM

Henry Knowles Beecher was an eminent practitioner and professor of anesthesiology at Harvard University, and also an active clinical research scientist. He had a profound interest in the shocking research abuses perpetrated by the Nazi “doctors” against more than seven thousand documented concentration camp captives, including Jews, Gypsies, Soviet prisoners, Poles, Catholic priests, political prisoners, and homosexuals. He carefully studied classified U.S. military documents detailing these atrocities, along with the proceedings of the Nuremberg “Doctor’s Trial” itself (1946–47), which culminated in the conviction of sixteen defendants, including seven who were put to death.

During the Nuremberg Doctor’s Trial, the defendants raised the argument that the United States was not itself a paragon of research ethics and had its own sordid past. Indeed, on cross-examination a key witness for the prosecution admitted that until the trial there were no human subjects protections codified in the United States. In fact, the first such code, “Principles of Ethics Concerning Human Beings,” was adopted by the American Medical Association in 1946 precisely in response to the Doctor’s Trial.

From his study of these documents Beecher was moved to explore the lack of protections for human subjects of research in the United States as well as the past exploitation of vulnerable populations in America. On March 22, 1965, he delivered a lecture at the Brook Lodge Symposium for Science Writers in Kalamazoo, Michigan (sponsored by the Upjohn Company), detailing more than a dozen experiments conducted that presented no therapeutic benefits to the human subjects involved and for which no consent had been provided. His speech provoked a spirited response both from the medical research community and the lay public.⁵ For the next year he continued to write and speak about the issue, as he worked to compile a carefully documented and illustrative study meant to demonstrate the scope and gravity of the problem.

On June 16, 1966, the New England Journal of Medicine published the fruits of Beecher’s painstaking labors in an article with the unremarkable title “Ethics and Clinical Research.” In the article, Beecher argued that “unethical or questionably ethical procedures are not uncommon,” and documented twenty-two published research papers in which human subjects received no therapeutic benefits.⁶ In all but two examples, there was no mention whatsoever of consent. Many of the human subjects were incapable of meaningful consent due to cognitive incapacity or extenuating circumstances. Indeed, many of the individuals affected had no idea that they were enrolled in a biomedical research project at all. The human subjects involved were profoundly vulnerable. These included soldiers, indigent patients of a charity hospital, institutionalized children with severe intellectual disabilities, the elderly, the terminally ill, and chronic alcoholics suffering from liver disease.

The cases Beecher cited included protocols in which researchers withheld known effective treatments, resulting in direct and grave harm to the participants.⁷ For example, in one study of rheumatic fever, investigators intentionally withheld penicillin from one hundred and nine military servicemen with streptococcal infections. They were never informed that they were part of an experiment. Two of these servicemen developed acute rheumatic fever and one developed acute nephritis.⁸ In another study of relapse rates of Typhoid Fever, efficacious treatment was withheld from a group of charity hospital patients, twenty-three of whom died “who would not have been expected to succumb if they had received specific therapy.”⁹

Other cases involved the intentional exposure of subjects to infectious diseases or other dangerous agents. The two most notorious examples involved the “artificial induction of hepatitis … carried out in an institution for mentally defective children” (later revealed to be Willowbrook State School in Staten Island), and the deliberate injection of live cancer cells into elderly patients of New York’s Jewish Chronic Disease Hospital.¹⁰ In the first case, the parents of the cognitively disabled children acceded to the administration of the virus, but “nothing is said of what was told them concerning the appreciable hazards involved.”¹¹ In the second case, the hospitalized patients were “merely told they would be receiving ‘some cells’ ” but “the word cancer was entirely omitted.”¹²

Beecher did not provide any identifying information for the researchers or institutions involved, but the twenty-two examples cited were drawn “from leading medical schools, university hospitals, private hospitals, governmental military departments (the Army, the Navy, and the Air Force), governmental institutes (the National Institutes of Health), Veterans Adminis...