No Informed Consent to the State

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Who knew I'd come to feel a kinship with the men of the Tuskegee
Syphilis Study? Some may think it presumptuous for a middle-aged,
professional white woman to identify with the victims of state experimentation
as horrific as letting men die —
after spreading the infection to their wives and children —
of a terrible and easily-treatable disease, but I don't think it
is at all an exaggeration to say that we all are victims
of the government's continuing insistence on doing ill in the name
of good. Let me explain…

I do brain-imaging research with human subjects, and I recently
had occasion to review the subject consent forms we use to inform
subjects about the study they are enrolling in and to obtain their
informed consent to participate in the study. We have separate forms
for research consent on healthy adult subjects, healthy children,
parents of healthy children, healthy adults, and a whole matched
set for affected (diseased) individuals. On the forms, the experimental
procedures are carefully described, the benefits to the patient
and to research efforts are outlined, and possible complications
and dangers are described as specifically as possible. All these
forms have as their historical background the terrible failures
of human research which were outlined for me as part of my early
training for working with human subjects. Nazi experimentation,
the Tuskegee and Willowbrook studies, and human radiation experiments
during the period of 1944–1974, along with other research fiascos,
all combined to convince institutions that a careful consent-based
approach, which provided as much information to the subjects as
possible and required their informed approval, was called for. Note
that most of these tragedies were the result of state, not private,
actions.

The last observation in the preceding paragraph isn’t just an aside — it is at the heart of the matter. Because of the power
of the monopoly state, only concerted action from outside or from
powerful forces within can bring it to heel on such awful abuses
of power as human experimentation. This was brought home to me by
a commentary I heard while listening to PRI’s Marketplace
radio program last week. Sol Gellerman —
one of their commentator-contributors —
was lamenting the failure of tax credits for companies which provide
their employees with stock options to increase employee loyalty.
Mr. Gellerman wasn’t pointing out the essential wrongness of the
state trying to influence behavior in a Skinnerian carrot-and-stick
fashion (with a carrot it swiped from the subjects in the first
place!), but only the more mundane fact that in this case the carrot
hadn’t been large enough or sweet enough to accomplish the task
of changing employee behavior.

What most caught my attention, though, was Gellerman’s characterization
of this government meddling as ‘experimentation’. Gellerman even
made an explicit comparison to a previous attempt at social engineering
– prohibition – as yet another ‘failed experiment’. The
final straw for me was his description of these disasters as ‘noble
experiments’.

Unwittingly perhaps, Mr. Gellerman touched on the essence of state
social engineering – and why it is so wrong. It is experimentation – on that point he is absolutely correct. But can experiments performed
on humans without the informed consent of the ‘subjects’ be anything
but wrong? To say that these experiments are performed by u2018society'
is meaningless — no matter how big
Mr. Greenspan's head becomes, it will never encompass all of society.
These u2018noble experiments' — tax breaks,
prohibitions, sin taxes, incentives, disincentives, social security,
etc. — are individual actions taken
deliberately by individuals acting through the monopoly control
of the state. These individuals are as guilty as any Nazi
doctor who tested a new gas on human prisoners.

Likewise, it is as ridiculous to speak of social tinkering as being
performed on u2018society' or u2018the economy' as it is to speak of u2018society'
performing the experiments. Societies are nothing but collections
of individuals, and each individual has the right to participate
(or not) in any particular design or u2018experiment' dreamed up by
a hopeful social engineer. The very catchphrase u2018social contract' —
used to justify the actions of a few taken in the name of all — gives away the truth that those who perpetrate their
experiments on others are perfectly aware that consent is needed
to morally justify their games. They seek a shallow sort of self-justification
or thin cloak for their crimes by calling them by the exact opposite
of what they actually are. The so-called u2018social contract' is no
more a contract than a turtledove is a terrestrial reptile.

In my research, the process of explaining the study to potential
subjects and getting their informed agreement to be included in
the study is often referred to as u2018consenting the subject'. The
men in the Tuskegee subject were never properly u2018consented', and
that, as much as the fact that the experiment happened to
go horribly wrong, is the evil which was done to them. That same
evil is being done to each and all of us every day by the amateur
social scientists filling our legislatures. They offer up u2018cures',
one after another, for all sorts of social ills — many of their own making —
and as each one fails to help or sets off a cascade of new ills
(each needing a new u2018cure'), they offer nothing but more experiments,
more untried poison pills of their own concoction, and nothing else
but a locked door to anyone trying to get out of the laboratory.

October
31, 2002

Susan
Hogarth [send her mail]
is a brain-imaging research coordinator in a neurodevelopmental
disorders research group.

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