Wednesday, February 21, 2007

Medical Sadism and Experimentation in America.

This essay has already attracted the attention of hackers. I have made and will continue to make the same corrections, as many times as necessary, ensuring that these criticisms are read.

Ezekiel Emanuel, "Unequal Treatment," The New York Times, Book Review, February 18, 2007, at p. 18.
Harriet A. Washington, Medical Apartheid (New York: Doubleday, 2007).
Ronald Dworkin, A Matter of Principle (Cambridge: Harvard, 1985).

In what must be one of the most unfortunate issues of The New York Times ever to hit the stands, there were several prominent articles in Sunday's Book Review that were riddled with errors and nonsequiturs, uninformed about the subjects under discussion, poorly written and not very well argued. I am shocked and saddened to see the Book Review reach this level of incompetence. It should also be said that the Times is such a good newspaper that you will always find something worth reading, even on a bad day. This was a bad day. Where are the editors and fact-checkers at what used to be America's "premier" Sunday Book Review?

Dr. Ezekiel Emanuel is identified as an "oncologist" and expert on "bioethics," whose knowledge of ethical theory is, actually, somewhat lacking. If this review is reflective of Dr. Emanuel's learning in this area of philosophy, I suggest a refresher course.

Ms. Washington's book, which I will read and review myself (because Ms. Washington deserves better than this comment on her work) is a brave critique of the U.S. medical establishment's arrogance and disdain for the dignity of persons, racism, unethical and (often) criminal disregard for human rights in the "use" -- there is no other word for it -- of human beings for research. Persons are not things to be "used." Human beings are not objects to be destroyed by social scientists interested in perfecting psychological torture methods.

Dr. Emanuel begins by noting a physician's testing of an African and Turkish innoculation technique against Smallpox back in June of 1721. Physician Zabdiel Boylston's "use" of slaves and others was "successful," we are told, since out of 244 people, "only" six died -- " a death rate of 2.4 percent, compared with 14 percent for the nearly 6,000 Bostonians who acquired the smallpox naturally." This reviewer's conclusion is: "As Boylston's use of slaves highlights, African-Americans have participated in biomedical research from the outset." (emphasis added!)

The problem with this so-called "participation" by African-Americans, Dr. Emanuel, is that there was not a whole lot of choice involved for men and women who were slaves, chattel, "things" to be "used" in eighteenth century America. Human agency in "causing" illness to persons is ethically different from persons getting a disease "naturally." The results of this test, whatever they might have been and regardless of whether physicians "learned" from their victims, is ethically tainted by the Mengele-like disregard for the autonomy and dignity of persons involved in any "use" of a human being without his or her "freely given, unimpaired, well-informed and knowing, highly specific and limited consent." This is true with regard to ANY medical treatment or procedure -- even more so when medical "experimentation" is involved.

American physicians -- disregarding their own ethical standards -- not only continue to involve persons in "research without telling them about it," but arrogate to themselves the authority to involve others "for their own good" in such research, then lie or fail to disclose what they have done. This lying is especially likely when their efforts are unsuccessful, even harmful or lethal. This is to deny victims the truth concerning their own lives. Often this failure and the resulting harm is intentional on the part of scientists "interested" in observing the suffering and collapse of their fellow human beings. The death of all affect in torturers makes the agonies of "subjects" a source of amusement and entertainment for these persons whose achievements are on display at Abu Ghraib and Guantanamo.

These actions are taken in violation of a physician's most solemn obligation and oath, which is to "do no harm." Worse, as I emphasize, often the harm is done deliberately for reasons that have nothing to do with the victim's desires or expectations, or even knowledge and welfare. A physician whose agenda is political or investigative has stopped being a physician in order to become a torturer. New Jersey's Terry Tuchin and Diana Riccioli are two active torturers today. This governmental-medical paternalism is only possible for one who considers him- or herself the superior of the person for whom such "choices" must be made. Justice Brandeis, wisely, counseled citizens to be most on guard when government claims to act for paternalistic reasons.

Ms. Washington is right to conclude that African-Americans have too often been unwilling victims of quack theories (and theorists), that they are "abused and exploited by a racist medical establishment." This history "goes far beyond the infamous Tuskegee syphillis study" -- where African-Americans were denied penicillin treatment -- "despite the fact that determining the course of the disease, the putative goal of the study, had already been accomplished." 2008-2009, Mr. Rabner. ("What is it like to be tortured?" and "Psychological Torture in the American Legal System.")

The suffering and pain -- even death -- of these human beings was deemed "incidental" to the study's goals by persons who regarded themselves as physicians sworn to alleviate human suffering and cure disease. Physicians abandoned their primary obligation in the Tuskegee study -- and many others since -- an obligation to provide for the "care and welfare" of these afflicted individuals, whose human rights were ignored, as they became objects or be "used" so as to further physicians' studies, interests and career goals. Ms. Washington writes:

"Researchers who exploit African-Americans were the norm for much of our nation's history, [they often still are,] when black patients were commonly regarded as fit subjects for nonconsensual, nontherapeutic research."

Ms. Washington concludes, as I do:

"... blacks [and others falling under a similar "sub-human" category] are still at greater risk than whites of being conscripted into research without giving their consent."

I will focus on the flawed utilitarian rationale offered by this reviewer in defense of such medical research, arguing -- internally to his consequentialist position -- that his argument is incoherent on its own terms; I will then raise an external critique, based on a deontological ethical theory, relying on Kantian-Rawlsian-Dworkinian rights thinking. I also borrow from Charles Fried.

I suggest that much medical research taking place in America is unconstitutional, immoral, even evil. I conclude that continuing secrecy about this shameful chapter in America's medical history, together with some honesty about the ongoing horrors covered-up (sometimes with the assistance of courts sworn to uphold legal and human rights) is a prerequisite to any progress.

Professor Washington argues that some people have been exploited by medical researchers. Furthermore, in a racist society, she suggests that it "should not shock" us that many victims are members of despised minority groups, especially African-Americans. It doesn't shock me at all. Dr. Emanuel does a little backtracking at this point: "Risky research -- whether beneficial or not -- has often relied on various vulnerable populations, including the elderly, soldiers, prisoners, the mentally disabled and orphans of all races and creeds."

Notice what is being said here by this expert on ethics: "Risky research" is tacitly admired, even when it is not necessarily "beneficial" to unconsenting subjects. My conjecture is that, if Dr. Emanuel and his loved-ones are secretly and without their consent made subjects of "risky" research that has no immediate benefit to them, with disastrous consequences for all concerned, that Dr. Emanuel may then have a reservation or two about the ethics of such research. However, since victims are members of "vulnerable groups" ("inferior persons," Mengele called them), such research is hunky-dory as far as many American physicians are concerned. Time to paraphrase Justice Holmes: "Three generations of physician torturers is enough!"

"Yes, African-Americans have been exploited, but they have not been singled out exclusively or even predominantly." Exploitation and the violation of human autonomy is O.K., Dr. Emanuel says, so long as it is not exclusively visited on one group; rather, such evil should be imposed on persons in many vulnerable groups. This is indeed impressive reasoning. It is permissible to wrong some people -- provided that you are willing to wrong others, who are similarly disadvantaged. Doctors can say that, while they are cruel, they do not discriminate and are willing to victimize anyone, reagardless of race or creed.

This flawed premise leads to grave difficulties with Dr. Emanuel's brand of utilitarianism. "Enrolling vulnerable people in research was justified as providing a way they could contribute to society." The problem is that they were selected to suffer and sacrifice, without their consent, in order to "contribute" to a society that really included other people -- like researchers, perhaps and not themselves. Society means researchers; victims means so-called "vulnerable persons" or "inferior" persons, allegedly -- like "African-Americans."

Isn't that nice? Not nice for the "vulnerable persons," of course, but what the hell. This way they can "contribute to society." Utilitarianism speaks of "the greatest good of the greatest number" (Bentham, Mill) in a setting where subjects are postulated as equals. "Each counts for one and none for more than one." However, in a racist society, each counts for a different sum. If you are a white researcher (which is a cultural designation and a political one), then you count for one. An African-American or Jew, or "others" -- made the unwilling victims of your "theory" or research -- may be less than fully equal. Therefore, victims will count for, say, three-fifths of one. "All are equal, but some are more equal than others." (George Orwell) Dr. Emanuel quotes Dr. Walsh McDermott's assertion of 1967:

"We have large social payoffs from certain experiments in humans. ... We could no longer maintain, in strict honesty, that in the study of disease the interests of the individual are paramount."

Who's "we"? The interests of the "individual" are certainly crucial to that individual. Good old Walsh is confident that he is not someone whose interest can be ignored. Walsh is probably white and went to medical school. Nobody is going to pick him for secret experiments that may destroy his life and psyche. That's the sort of thing only done to inferior or "vulnerable" people, who don't really matter anyway, because physicians can "learn from them." There's always more where they came from. This way Dr. and Mrs. Walsh (who likes to shop), or their children, can benefit from these studies five or ten years down the road.

Racism is absurd and evil, but it has its own logic of suffering and death. Like all evil, racism has a tendency to spread. Being a black person (African-Americans may wish to use the "N" word) is a socially constructed category. It has to do with being seen as "other, inferior, vulnerable, expendible." In Nazi Germany or slave societies, persons called "Jews" or "Negros" are really being described as the same kind of things. " Things" (or objects) are what you use for your purposes because "they" have no purposes or intentions that one needs to worry about. In America, you can be (now use the "N" word!) an African-American even if your skin is white. I can attest to that. The label means that you are deemed sub-human. I know what that's like. I also know what it's like for those who have themselves committed crimes -- or allowed offenses to be committed by others against me -- to judge my "ethics." (New "errors" inserted -- oh, boy.)

Dr. Emanuel's utilitarianism (regardless of his race) involves sacrifices by others, for the benefit of people, like him, who are mistaken for society as a whole. Based on Emanuel's own utilitarian premises, this stance is unethical because of the unequal distribution of burdens in relation to the disproportionate receipt of benefits. Also, this "ethicist" reviewer fails to recall the important lesson learned in seventh grade: "Two wrongs don't make a right."

It is not o.k., Ms. Poritz, to torture African-Americans if you can happily point to Jews or Latinos who have also been tortured in other societies. This is the sort of argument that philosophers describe as "flawed moral reasoning."

A brief word about what is missing from much ethical thinking in American social science and medicine or law these days is any appreciation of deontological traditions in ethics or rights-thinking, which is essential to the American Constitutional tradition.

"Deontological ethics is ethics based on the notion of duty, or what is right, or rights, as opposed to ethical systems based on the idea of achieving some good state of affairs ... or the qualities of character necessary to live well ... "

Dictionary of Philosophy, p. 100.

There are things that may not be done to persons simply by virtue of their ontological status as persons, even if you honestly believe that it will benefit them to do such things. Others may not alter you, without your consent, "for your own good" for this same reason. A person is a locus of rights and responsibilities whose AUTONOMY as a self-legislating being -- choosing, intending, willing -- is equal to your own. Thus, others are entitled to respect. This is subject to a person's compliance with criminal laws -- and even criminals have rights which society may not violate. Convenience or social "benefit" does not enter into this calculus, that is, if a society wishes to remain a moral one, committed to democracy and the rule of law.

To violate a person's rights is not only to injure that person, it is also to denigrate and diminish yourself, as the violator. This explains what is meant by New Jersey's "feces-covered" Supreme Court. By violating or allowing for the violation of the rights of another human being -- by dehumanizing him or her -- you also become something less than human, morally speaking. A physician is demeaned by such a betrayal of trust leading to infliction of injuries upon a human being for purposes of exloitation. For a court to be stained by such evil is to lose all legitimacy. New Jersey's Supreme Court has done exactly that -- it has become something less than a tribunal of law.

All use of persons as unwilling and nonconsenting subjects of experiments is a reduction of persons to the status of slaves, without rights to autonomy and privacy, dignity or respect. Such a thing is not simply a mistake or a breach of ethics. It is a great and loathsome evil. This is true even when such a horror is sanctioned by a so-called "Supreme Court" in its stupidity and ignorance -- as in New Jersey. Ronald Dworkin explains why rights matter and suggests why, I believe, this sort of experimentation must be prohibited. ("Terry Tuchin, Diana Lisa Riccioli, and New Jersey's Agency of Torture" and "An Open Letter to My Torturers in New Jersey, Terry Tuchin and Diana Lisa Riccioli.")

"We need rights as a distinct element in political theory, ... when [a] decision that injured some people nevertheless finds some prima facie support as the claim that it will make the community as a whole better off on some plausible account of where the community's general welfare lies. But the most natural source of any objection we might have to such a decision is that, in its concern with the welfare or prosperity ... of people on the whole, ... the decision pays insufficient respect to its impact on the minority; and some appeal to equality seems a natural expression of an objection from that source. We want to say the decision is wrong ... because it does not treat people as equals entitled to the same concern as others."

A Matter of Principle, pp. 370-371.

All victims of medical sadism and experimentation should be seen as our natural moral equals, brothers and sisters. Victims' rights to self-determination and respect for their dignity require that reparation -- or acknowledgment at least -- be made by those contaminated by approval or participation in their dehumanization. This insistence will never end and the struggle for that justice, which is often racial, will not be halted until such suffering victims are finally seen and welcomed into the dialogue of justice in their community, AS FREE AND EQUAL PERSONS.

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