Brain Experimentation

All lasting human creations, material or ideological, are ultimately tested on the people.

The cell phone, welfare reform, nuclear power plants, redistricting schemes, roller blades, declarations of war—all are human fabrications that are eventually integrated into people's lives. Those ideas and objects then reciprocally shape how we live and who we become, in ways often inscrutable. In that sense, every member of society lives perpetually as a subject of social, legal, political, consumer, environmental, and ideological experimentation.

There is no real attempt to give the subjects of these experiments anything like fully informed consent, no belief that the equivalent of clinical equipoise must exist before exposing consumers to a new cell phone or radial tire. We live in the midst of a host of ongoing experiments in which we are all test subjects, and yet no one seems particularly concerned. Then why are we so excruciatingly concerned about the same kind of experimentation when it happens in medicine? In what sense is medical experimentation so drastically different from the social experiments we live in every day? Why do we think of medical experiments on human beings as ethically charged and problematic in a different way than "architectural experiments," even though the building could, theoretically, collapse on our heads?

In 1974 Hans Jonas argued that medical experimentation is outside the normal bounds of social and moral obligation. It differs from the civic obligations that we impose on our citizens, says Jonas, because the research subject is called on only to obey, to be experimented upon. Thus, the subject is treated not even as a means to an end, but as a token, a passive thing, an object rather than a person. Even conscripted soldiers are expected to show traits, such as courage and endurance, that underscore their humanity and show they are not mere victims of another's ministrations.

Jonas proposes that only the genuine act of volunteering to participate can elevate the research subject above the condition of "thinghood." That act, Jonas insists, must involve a measure of self-sacrifice, must be beyond the call of duty, must be in some sense "holy." Jonas elevates participation in medical experimentation to sacralized altruism. Society has no right to ask such sacrifice from its members, says Jonas, but must leave to "grace" the chance that they will choose participation.

Contra Jonas, one could argue that there is much medical experimentation in which subjects would see themselves—even if conscripted like soldiers—as active partners in the act of inquiry, as allies against the common enemy of disease. However, my point here is not to refute Jonas. It is to identify and examine a fundamental social tension arising from medical experimentation. On one hand, we recognize that medical experimentation is immediate and risky. It often involves people in distress, sometimes desperately so, being persuaded by a figure who possesses great cultural authority. Medical experiments involve placing substances inside our bodies, or surgically changing ourselves, in ways that are supposed to improve our lots but may in fact poison us, sicken or injure us, or delay or prevent other treatments that might benefit us more. Medical experiments, at least in theory, offer the individual no direct benefit. On the other hand, we see such experimentation as a social good and believe it to be a fundamental need in our biotechnological society.

We try to defuse this tension, in the tradition of Jonas, by convincing ourselves that participation in experimentation is voluntary, that it is an act of altruism, a sacred self-sacrifice. The problem is that we also know that this is not so. A study published in 1998 of cohort-specific consent and patient controls in phase I cancer trials showed that large percentages of subjects, perhaps the majority, engage in clinical research primarily in pursuit of personal therapeutic benefit, not out of altruism. Though medicine can promise the subject no direct benefit, today the subject often expects it, and the concepts of "research" versus "therapy," or "clinician" versus "researcher," have become thoroughly muddled. The medical-industrial complex and the billions of dollars it generates are wholly dependent on recruiting a virtually endless supply of bodies as research subjects, and standards of voluntariness are obstacles to be negotiated. The competition for research subjects is getting more acute, and the promises of cures and mysterious new healing technologies more enticing. Voluntariness is a token concept that allows the business of research to carry on, a talisman rather than a sacred ideal.

We maintain the research enterprise by ignoring the glaring contradictions it represents. We insist on the rhetoric of patient altruism, when participation is actually largely about self-benefit. We regard researchers as benevolent scientist-philosophers, when in fact their careers, salaries, promotions, reputations, and institutional power are all dependent upon the success of the research. We entrust those very people who have a profound stake in recruiting subjects with the grave responsibility of telling the subjects all the reasons they should not participate. And we house this enterprise in institutions whose financial existence depends on its perpetuation.

We justify research itself on the basis of clinical equipoise, the uncertainty over whether the standard of practice or the experimental procedure will yield greater benefits for the patient. Yet we continually allow pharmaceutical companies to test their copycat drugs, drugs whose purpose is to capture an existing market share and that promise little added benefit, on human subjects.

Our entire human research enterprise is engaged in a conspiracy of silence on these issues. The conspiracy works because, at some level, all benefit. The researchers/physicians advance their careers, the drug companies market their products, the academic medical center grows in prestige and power, and patients (in general) get newer and better drugs. So why disturb this delicate equilibrium? Why suggest that the conspiracy of silence is wrong, and that, ultimately, the benefits of the system are outweighed by its harms?

Simply, when we are engaged in social engineering, we should say so. Jonas is ultimately correct, and the dignity of the individual demands a truly informed consent—not in its present sense of rehearsing a litany of risks and benefits, but a true consent, exposing the assumptions of the system, a consent that is prior to the conspiratorial environment that makes true consent impossible.

Clinical patients, confronted with a difficult medical choice, typically ask their physician: "What would you do in my place?" The question reinforces the healing relationship, cements bonds of trust, and confirms the mutuality of purpose of the patient and physician. That question is nowhere available to many individuals considering participation in medical research. There is no one to answer it—certainly not the researcher, who is deeply invested in having the individual join the protocol. But neither can the subject appeal to his or her personal physician, who may see no other choices even when other choices are there. So pervasive and persuasive is the research imperative undergirding all of modern medicine that the default mode of untreatable illness is to become a human subject, not to seek the succor of the family or the comfort of travel or acts that satisfy the soul.

The moral obligations that Jonas rejects thus in fact pervade modern medical assumptions. We all tacitly agree to be part of the great experiment that is the American medical pharmagarchy. In that sense, then, medical research has become indistinguishable from all the other forms of social experimentation in which we live as unwitting and passive subjects.