Bioethics needs to protect the vulnerable

We are embodied, vulnerable and mutually dependent human beings, argues an American scholar in this profoundly important book.

By Greg Walsh

What does it mean to be human?

How legal systems answer and should answer this profoundly important question is addressed by O. Carter Snead in What It Means To Be Human: The Case for the Body in Public Bioethics.

Professor Snead is well qualified to undertake this project. He is a professor of law at the University of Notre Dame and previously served on the US President’s Council on Bioethics, the Council of Europe’s Steering Committee on Bioethics and the International Bioethics Committee. He led the US government delegation to UNESCO serving as its chief negotiator in drafting the Universal Declaration on Bioethics and Human Rights and is a member of the Pontifical Academy for Life, the principal bioethics advisory body to the Pope.

Snead begins his book with an overview of the history of bioethics in the United States beginning with a series of bioethical scandals that occurred in the United States and other Western countries in the mid-20th century.

The first notable event was the publication of an article in 1966 by Henry K. Beecher describing 22 unethical experiments in the US including studies that involved infecting disabled children with hepatitis, injecting cancer cells into elderly patients, and withholding medical treatment from military servicemen and hospital patients to assess the development of different diseases.

The second major scandal was a study by the Tuskegee Institute focusing on African American men with syphilis who were never told about their diagnosis or that they could be cured of their disease with penicillin. The study began in 1932 and only ended in 1972 due to public outrage when the media reported on the study. By this time many of the men (and the women and children who they had infected) had either died from the disease or were suffering serious health problems caused by the lack of medical care.

The third incident involved medical researchers in the US, England, and Finland in the mid-20th century keeping children alive after abortions for the purpose of medical experimentation. Some of these experiments involved the decapitation of living children in order to study brain activity and the removal of organs from children while their hearts were still beating.

These three scandals led to national inquiries in the US into how medical research should be regulated and resulted in major legislative and policy changes including the introduction of the National Research Act, the establishment of the National Commission for the Protection of Human Subjects and Behavioural Research and the denial of funding and restrictions on research involving aborted children.

After providing an overview of the key bioethical developments in the following decades, Snead then moves to a discussion about the anthropological understanding that lawmakers in the United States (and other countries in the world with similar legal systems) have about the nature of human beings.

He argues that their anthropological view “closely tracks what both sociologist Robert Bellah and philosopher Charles Taylor have identified as ‘expressive individualism’, in which persons are conceived merely as atomized individual wills whose highest flourishing consists in interrogating the interior depths of the self in order to express and freely follow the original truths discovered therein toward one’s self-invented destiny”.

Snead is highly critical of such a vision claiming that it is a “gravely incomplete and thus false vision of human identity and flourishing” that “reduces the person to a lonely agent of desire, defined by the will and the capacity to make choices, whose highest thriving is self-definition and the pursuit of economic and social aspirations”.

Instead, Snead argues, the “truth is that persons are embodied beings, with all the natural limits and great gifts this entails”.

In rejecting “expressive individualism”, Snead proposes that we should instead embrace an anthropology that recognises that we are embodied beings. As we are bodies, “vulnerability, mutual dependence, and natural limits are inextricable features of our lived human reality” and these features establish relationships with obligations “to come to the aid of vulnerable others, including especially the disabled, the elderly, and children”.

In supporting his understanding that “expressive individualism” is the foundational anthropology of the legal system, Snead first considers the issue of abortion. He analyses the key abortion decisions of the US Supreme Court starting with Roe v Wade, in which seven justices held that there was a fundamental right to abortion contained within the right to privacy found to implicitly exist within the Constitution.

The foundation of these Supreme Court decisions is the anthropology of “expressive individualism” which led the Court to discover a “constitutional right to self-determination … in the form of abortion so as to overcome the burdens and obstacles to pursuing one’s chosen destiny, whether they be imposed by others, the state, or perhaps even nature itself”. Affirming this position requires the Court to implicitly declare “the human being in utero to be something far less than a legal person for reasons that it never explains”.

In contrast, Snead asserts that an approach to abortion based on the anthropology of embodiment would offer maximum support for pregnant women “providing for their health care and other needs, both during and after the pregnancy”. It would also incentivise “family members (including the child’s father), employers, the community, and the state to construct the vast networks of giving and receiving required to support the flourishing of all involved”. In situations where the pregnancy poses a serious threat to the mother, the law would “draw upon existing doctrines and principles governing circumstances where the vital interests of innocent persons conflict, keeping in mind that this is a case involving a mother and her child”.

On the issue of assisted reproductive technology there has been remarkably very little legal regulation in the area by lawmakers in the US. This lack of legislative and judicial regulation is understandable considering the law’s embrace of “expressive individualism” as legal regulations could easily undermine the ability of autonomous individuals to pursue their life goals including their reproductive objectives.

Snead is critical of this lack of regulation, claiming that the law “fails to teach against the destructive notion that the parent-child relationship is defined by will, control, and mastery rather than unconditional love and gratitude”.

Furthermore, this lack of appropriate laws can lead to a public perception of reproductive technologies not as the “medically-aided conception and birth of children to be welcomed and loved unconditionally, but rather as a form of manufacture of products subject to quality assurance, and accepted or rejected according to their conformity with the preferences and desires of the ‘customer’ who paid for it”.

This affirmation of “expressive individualism” causes the law to be “blind to the weak, vulnerable, fragile, and dependent, and all interests and concerns are crowded out by the law’s focus on the desires of the individual will seeking its own way.”

The alternative approach based on the anthropology of embodiment would instead affirm that a person created with the assistance of reproductive technology is “a gift, a person who has been conceived, not a product manufactured to serve the desires of another … [whose] ‘imperfections’ or ‘flaws’ are of no consequence, except insofar as they are occasions for unconditional care and support”. Snead acknowledges that such an approach would require “restraint, discipline, and sacrifice” but asserts that this is the essence of the relationship of parent to child.

Regarding the legal regulation of end of life issues the law again conforms to an anthropology of “expressive individualism” affirming the freedom of individuals to end their lives when desired and to even receive assistance from the State and individuals to ensure this is achieved.

This approach is seen in Re Quinlan where the Supreme Court of New Jersey held that life sustaining measures could be withdrawn from a young woman in a “persistent vegetative state” and in Cruzan where the Supreme Court affirmed that a patient had a constitutionally protected right to refuse lifesaving hydration and nutrition. Although the Supreme Court held in Washington v Glucksberg and Vacco v Quill that laws prohibiting assisted suicide were not unconstitutional, the Court did not require states to prohibit the practice, which has meant that assisted suicide is now legal in nine states and in the District of Columbia.

As Snead notes, the legal regulation in this area is based on the conception of “the solitary individual seeking to assert his will in the face of mortality and suffering” and the individual’s right “to make a final existential choice that will express his deeply held views about the meaning and value of his life and how to live it”.

This anthropology of expressive individualism in regulating end of life cases “fails to account for the diminished agency at the margins of life for an embodied being in time, overstates the possibility of autonomy in this setting, and underestimates the risks of systemic neglect, fraud, abuse, mistake, and coercion”.

A superior legal approach based on the anthropology of embodiment would not look to additional regulations to further affirm “the autonomy of the solitary individual to annihilate himself” but would rather aim to strengthen community networks of care and to encourage those near the end of life to “see their own intrinsic and equal dignity despite suffering from a diminished and dependent condition”.

O. Carter Snead’s book is a profound challenge to the dominant anthropological understanding of humanity that is at the foundation of legislation and court decisions regulating the most critical issues involving human beings and their ability to live fulfilling and dignified lives.

Through detailed and persuasive arguments he explains the need to reject “expressive individualism” and to replace it with an anthropology based on the reality that we are embodied, vulnerable and mutually dependent human beings with obligations to others especially children, the disabled and those at the end of their lives.

The book is essential reading for anyone interested in bioethics, the law and how best to improve our legal system so that it can more effectively promote the flourishing of all.

Editor’s note. This appeared at MercatorNet and is reposted with permission.