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Article
Why Informed Consent? Human Experimentation and the Ethics of Autonomy
Journal Articles
  • Richard W. Garnett, Notre Dame Law School
Document Type
Article
Publication Date
1-1-1996
Publication Information
36 Cath. Law. 455 (1995-1996)
Abstract

Not long ago, the welfare reform debate took a provocative turn. New Jersey welfare recipients challenged the state's Family Cap rule, which denied additional cash aid to parents who conceive children while on welfare. Welfare rights activists argued that the rule "with[held] benefits to see if [this would] alter human behavior." They insisted that the innovative, but stern, Family Cap rules were effectively experiments on welfare recipients without their consent.

This is a powerful argument. After all, consent enjoys talismanic—if not sacramental—status in modem life and thought; it is our "master concept." But why? Why should consenting mean so much that by comparison other ideas and ideals often mean so little? The power of consent lies deeper than its everyday meaning of "Sure, go ahead" or "Let's do it." It prompts more questions than it answers: May someone else say, "Sure, go ahead. Do something to him?" If I consent to something now, am I forever stuck with or bound by my choice? May I delegate my power to consent or assign my consent's moral force to someone else? May I consent to anything I wish? Can everybody provide morally meaningful consent, or only those who possess or exhibit autonomy (whatever that means)?

Such questions have always prompted frustratingly interminable discussion. But we continue to wrestle with them because consent and its mysteries have "an extraordinarily firm hold on our imagination .... [Consent] provides perhaps the single most prevalent paradigm structuring our thinking about law, society, morality and politics." Consent also animates other cherished but nebulous concepts. It is intimately connected to our ideas of "liberty" (I may do what I choose to do, and may refuse to consent to actions in which I do not wish to be involved); "equality" (we all get to consent); "autonomy" (I and only I may make these choices and decisions); and "dignity" (I may make these decisions because of who and what I am).

Perhaps because consent is so embedded in our moral thinking, we put it to at least two different tasks. First, consent is a basic and fundamental prerequisite of our political and social institutions and of our dealings with one another. We have lost the premodern vision of the world as an organic whole, and so consent, rather than nature or design, structures the coming together, binding together, and living together of modern master-less men. This side of consent animates the political "consent theory" and permeates the rhetoric and myths of the American founding. It is a necessary first condition for the legitimacy of the institution or end-state that proceeds from the act of consenting.

Consent has another job. The fact that a certain institution, result, procedure, or transaction was consented to is often pointed to as the moral justification for that institution, result, procedure, or transaction. Thus, not only is consent necessary for a moral end-state, it is also sufficient. Consent not only legitimates, it also justifies. Not surprisingly, this is the face of consent that resonates with libertarians and libertines.

This "justifying" side of consent raises some timeless and thorny questions. What if people consent to activities and results which are repugnant, or even evil? Even John Stuart Mill worried about honoring consensual slavery. For Mill, one who enslaved himself failed to play by the rules, "missed the point" of his freedom, and could therefore be restrained without disrespect to Liberty. Today, we wonder whether a woman's consent to appear in graphic, demeaning, or even violent pornography justifies or immunizes the pornographer. If she appears to consent to a relationship in which she is repeatedly brutalized, does her consent stymie our efforts to stop the brutality or punish the brute?

These problems make us squirm a little, just as they did Mill. We have three ways out: We can say, first, "Yes, consent justifies whatever is consented to-you consented, so case closed;" second, "This particular consent is deficient—you did not really consent and so the result or action is not justified;" or third, "You consented, but your consent cannot justify this action or result." For example, Dr. Kevorkian apparently elicits consent from his subjects before helping them kill themselves. We can note the consent, shrug, and be on our way. Or, we can deconstruct the consent, scrutinizing it carefully for the indicia of autonomy—was it "knowing?," was it "informed?"—that give consent its moral force. Finally, we can say that while consent is not irrelevant (it would certainly be worse if Dr. Kevorkian's subjects did not consent), the consent does not and cannot justify either Dr. Kevorkian's act or the act of his subject.

Note the subtle yet crucial difference between these three options: In the first, consent is king, while the third option assumes a moral universe shaped and governed by extraconsensual considerations. The second option, however, reflects the tension between the other two. We might block the consented-to action, but we pay lip service to consent's justifying role by assuring ourselves that had the consent been untainted, had it been "informed," it would have had moral force. In fact, we pay lip service precisely because we often silently suspect that consent cannot and does not always justify." Therefore, in difficult situations, we declare that the decision maker did not or could not really consent, that the consent was not "informed" or "knowing" or "voluntary." Rather than admit that the consent does not and could not justify the act, we denigrate the consent and, necessarily, the consenter as well.

This is cheating; it is a subterfuge designed to hide our unease and to allow us to profess simultaneous commitment to values that often conflict. This Article will discuss this subterfuge in the context of experimentation and research on human beings. First, to set the stage, I will briefly discuss human experimentation, its history, and the role of consent in research ethics and regulations. Next, I will show how consent has failed to control abuses in human experimentation, and how it has actually undermined the dignity of research subjects by deconstructing their ability to make decisions. Finally, I will argue that consent cannot justify all experiments. Consent, and the ethics of autonomy its prominence reflects, is not up to the task we have assigned it. I conclude with some thoughts on an ethics of relationships, one grounded in a more robust conception of human flourishing and telos, which may better promote and protect our ideals in human experimentation.

Comments

Reprinted with permission of the Catholic Lawyer.

Citation Information
Richard W. Garnett. "Why Informed Consent? Human Experimentation and the Ethics of Autonomy" (1996)
Available at: http://works.bepress.com/richard_garnett/16/