What Would You Do?

Imagine that you had an unmanageable child: a child who didn’t understand anything, who sucked up all the care you could give, who seldom responded and did so only after you expended maximal effort. Suppose you had other children. You could not afford private care. If you were offered a solution, would you take it? Suppose there was a slot open in a State-run institution where you could place your troubled and troubling child immediately instead of being on a multi-year waiting list. If, they required you to sign a piece of paper authorizing certain procedures to be done to your child, which didn’t sound that bad, would you do it?

Certain families found themselves in this precise situation in the 1950s, and 60s to gain admission for their children in the Willowbrook State School in Staten Island, NY. The paper that had to be signed[1] was authorization to infect their children with hepatitis.

This case is literally a textbook example of a medical ethics problem.

The arguments in favor of the experiments: 1) since “most” of the patients entering the Willowbrook facility contract hepatitis, it was perfectly fine to purposely infect them under controlled circumstances; 2) the benefits outweighed the risks.

Those against argued: 1) efforts should have been concentrated on ridding Willowbrook of hepatitis instead of infecting those who did not have the disease, against the interest of the person being infected; 2) informed consent was essentially coerced from parents who were in an untenable situation.

I am not a medical ethicist. However, I just think it is wrong to inflict harm on completely dependent individuals who have no understanding or control over what happens to them. The comparison to the experiments of Nazi doctors is not unreasonable in my mind.

However, there are those who disagree.[2],[3],[4]

Saul Krugman, the principle investigator in these hepatitis experiments states the following:

“While I agree with the critics of medical research who state that the ends (successful accomplishments) do not justify the means, I believe that this generalization does not apply to our Willowbrook studies.”[3]

Joan Giles, a colleague of Krugman, states.

“A farmer may pull up corn seedlings to destroy them or he may pull them up to set them in the hills for better growing. How then does one judge the deed without the motive?”[4]

I wish I understood the calculus of the human experimenters who inflict harm on their subjects “for the greater good”.

The purpose of this post is to offer a reminder that one has to be continually aware of this type of “ethical” calculation.  An editorial in Annals of Internal Medicine says it best:

“Moral lessons are quickly forgotten. Medical ethics is more fragile than we think. Moral reasoning based on defective premises tends to recur in new settings. Not all Nazi physicians were mentally deranged – they believed they were doing the right thing. If we are to avoid even attenuated errors of the same kind, we are obliged to examine a few of their errors even now.”[5]

[1] The informed consent letter is reprinted in this document: http://science.education.nih.gov/supplements/nih9/bioethics/guide/pdf/Master_5-4.pdf

[2] Robinson, W.M., Unruh, B.T. The Hepatits Experiments at the Willowbrook School in A Selected History of Research with Humans. http://science.jburroughs.org/mbahe/BioEthics/Articles/WilliowbrookRobinson2008.pdf

[3] Krugman, S. Reviews Of Infectious Diseases, Vol. 8, No. 1, January-February 1986

[4] Giles, J. Letter to the editors, Lancet, May 29, 1971 pg 1126.

[5] Editorial, Annals of Internal Medicine, 15 August 1997. 127:307-308

4 thoughts on “What Would You Do?

  1. Life hands us choices requiring us to be more than human. Or less. The purpose of medical ethics is to form a bridge of collaborative humanity transposing our weaknesses to strengths. This would be how physicians heal themselves daily in the Healing Garden. — The Healing Garden gardener

    • I think the purpose of medical ethics is to protect people who have no power, from having to choose between unacceptable alternatives. In this particular case, the medical establishment that offered care for children who could no longer be taken care of at home at the price of agreeing to subject these children to medical experimentation – of which they knew no details. Where is the collaboration in that? Where is the collaboration between the Tuskegee victims and the medical establishment? Where was the collaboration between the people frozen to death and the Nazi doctors that perpetrated these unspeakable acts? These are all specific and deliberate acts that should never ever be repeated. It is not a matter of collaborating between the perpetrators and the victims. It is a matter of not allowing this to recur in the future.

      • Those of us brothers who are products of a 1950’s era American cultural childhood had few models of the proper use of passionate morality. There is Gregory Peck in, “To Kill A Mockingbird.” My Grandmother held both Mr. Peck and Dag Hammarskjöld in almost equal esteem.

        Otherwise, moral passion devolves into unspent anger. The greater the man, the greater the strength of this anger. Hence, a reasonable course to follow in our emotional development. In this case, it is foolhardy to abandon the principles and memories of our strength. Like an archetypal Samson, why go for a haircut?

        Anger must, per force (no pun intended) trade ultimately in denial. Conflict, inner and outer, is simply the inability to love. However, as the roots of our moral passion, it is difficult to release the indignities whose memories we come to adore as the source of our moral strength.

        With and without our consent, we are all an experiment in bench to bedside medicine. We are all an experiment in legislated social change, swinging back and forth like a pendulum. Woe to those like your Brother and your family, who survive several competing regimes. It is the result of our unchecked social culture.

        In the Healing Garden, we presume that when healing reaches a critical mass, our moral indignation becomes based in collaboration. This is the significance of gestaltung. It is more than the sum of its parts. Everything else is small talk. We wish you every strength on your healing journey. — The Healing Garden gardener

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