THINKERY

Autonomy
and Therapy

SILJA SAMERSKI, I I, A
P S U H.

The pregnant Ms. K. is in a quandary. After listening to the geneticist

explain chromosomes and risk curves to her for an hour and a half, she now faces a
momentous decision: should she have an amniocentesis to help her decide, on the
basis of the predicted developmental risks, whether she wants to have her child or
not? The counselor has made it very clear that he cannot advise her. She must make
an autonomous decision.

Autonomous Decisions
Up through the s, gynecologists prescribed amniocentesis for their patients
when they considered the intervention to be indicated. Nowadays, the chromosome
Self-empowerment
check is one among a range of prenatal services available to a pregnant woman from
today apparently means
which she herself must choose. Women are sold this new compulsory decision-
being able to choose
making as an increase in freedom and self-responsibility. Self-empowerment
between a growing number
today apparently means being able to choose between a growing number of
of predetermined options
predetermined options: supermarkets with hair shampoos for every type of hair,
holiday catalogs with adventure tours in countries, holistic wellness with yoga,
African drumming in church, and finally in the delivery room with the birth options
Caesarean section or vaginal. Those considered to be self-empowered today are
those who can choose what they want in every situation in life.
The infantilized patient must be educated if she is to evolve into a self-empowered
consumer. Nowadays, an entire cadre of specialists make a living as counselors and
other professional educators who teach their clients how to make responsible and
autonomous decisions. However, the self-empowerment that such counseling

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promises gives rise to harmful new dependencies. The counseled learn that they can
only rely on professional diagnoses, test results and statistical values, and no longer
on what they experience, feel and comprehend.
Only those who abandon their intuition and experiences can be self-empowered.
The only decision they must make is what treatment program to undergo. But they
themselves bear the responsibility for any potential risks and consequential damage
after all, they made the choice themselves, informed and well aware of the facts.

Ms. Ks Consultation
Back to Ms. K. Her genetic consultation is a particularly obvious example of this
new form of education in decision-making. The counselor repeatedly points out that
there is no way around it: Ms. K must make the decision herself. I can only say what
can be done, not what should be done because we dont have to live with the
consequences, he explains. Ms. K looks at the risk curves and the chromosome
diagrams spread out on the table in front of her. Impulsively, she lays her hand on her
belly. If she has the test done, she thinks, then no one can reproach her for not having
done everything within her power. Yes, shes afraid of what is awaiting her with the
In Germany, genetic
child a small flat, an overworked husband and not much money. On top of that,
counselors alone maneuver
an unhealthy child? But the risk that the intervention will trigger a miscarriage . . .
more than 50,000 women
now that she is finally pregnant after so many years Ms. K does not even want to
and couples every year into
think about it. And what if the test does not deliver the okay she hopes for? No,
a hopeless situation.
that is even less pleasant to think about. Anything but not that. Everything will be
just fine. The counselor makes notes for his report. While he writes, he exhorts Ms. K
again: You do it or you dont do it, but someday you must make the decision!

The Quandary
Ms. K is distressed. No matter what she decides to do, the counselor has maneuvered
her into a situation where she can no longer act sensibly and decently. She can only
choose which of the more or less possible evils she wants to accept: either the
risk of miscarriage and possibly a bad test result or a disabled child and spending the
rest of her life feeling that it could have been avoided. In Germany, genetic
counselors alone maneuver more than , women and couples every year into
this hopeless situation.
Yet, counseling expectant mothers is only the tip of the iceberg. More and more
professional counselors consider it their job to bring their clients in such a quandary.
No matter what the subject of the consultation is, whether it takes place at the

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employment office with a cancer consultant, at the Bavarian forest office, or at the
Deutsche Bank: In each case, the explicit goal of the consultation is to help citizens
make an autonomous decision.

CONSULTATION IN HISTORY: THE PATH TO SELF-EMPOWERMENT

The Human in Need of Counseling

The human in need of counseling is a modern creature. Up through the th
century, the king had his own advisor, and he could consult legal advisors in official
matters, but citizens in need of counseling and the corresponding professional
From fertility counseling
experts to satisfy this need did not yet exist. Today the situation has changed: from
to pregnancy conict
fertility counseling to pregnancy conflict counseling to death and grief counsel-
counseling to death
ing humans are now in need of counseling from the cradle to the deathbed, or
and grief counseling
even beyond: in need of counseling from the prenatal to postmortem stage.
humans are now in

need of counseling from

The Beginning of the Age of Consultation: The 1920s
the cradle to the death-
In Germany, the age of consultation began during the Weimar welfare state. When
bed, or even beyond:
the new republic entrusted the state bureaucracy with the task of safeguarding the
from the prenatal to
health and fitness of the population, counseling and care centers mushroomed.
postmortem stage.
From care centers for alcoholics, counseling centers for expectant or new mothers,
and infant care centers to parent counseling, sex and marriage counseling, and career
counseling, Weimar citizens were subjected to a siege of solicitude from experts for
every situation in life. The working class in particular was to be taught that they
should no longer organize their lives based on habits, traditions and common sense,
but should observe scientifically based health regulations. Babies only received clean
milk when young mothers were educated in hygiene, regular breastfeeding and
healthy nutrition. With contraceptives, the sex counselor gave married couples
lessons in sexual behavior and eugenic family planning.

Career Counseling: Guidance in Rational Decision-Making

The first counselors to engage in the task of mobilizing their clients for rational
decision-making were the vocational counselors of the s. They wanted to instill
an awareness, especially in young people searching for jobs, that capitalist society
placed demands on the choice of a career that only experts were qualified to deal
with. Industry was striving for the greatest possible efficiency in exploiting workers,
and the coffers of the welfare state could barely support the rising number of
unemployed wage dependents. Career counseling was thus entrusted with the task

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of bringing the right man to the right job. In contrast to his colleagues, the alcohol
counselor who, if necessary, can commit the drinker to an institution or the sex
counselor who urges couples to use a diaphragm, admonitions seemed inappropriate
for the vocational counselor.

Education in Decision-Making Today

Eighty years later, we can recognize in the efforts of the Weimar vocational
counselors to provide a scientific basis to the career choice of young graduates, the
precursor of todays education in decision-making. Back then, however, no one
talked about self-empowerment. On the contrary, a manual on career counseling
from required the counselor to employ his powers of persuasion to convince his
client of the necessity of acting in such a way that he will be of the greatest benefit to
Like most women of
the national economy. But for Ms. K in her genetic consultation, there is no
her generation, Ms. Ks
necessity other than that of making a choice. There are no scientific grounds for the
mother saw no reason
test and none against it. This should also be taken into consideration, the counselor
to visit a physician
tells her with a shrug. He does not care what decision his client makes in the end;
as long as nothing
what matters is only that she make an informed choice. The goal of the consultation
was wrong with her.
is no longer normative behavior, but, far more subtle, option-guided decision-
making. By informing her of the calculable risks, avoidable disabilities and prenatal
test options, the counselor radically reframes Ms. Ks hope-laden pregnancy. The
unborn child becomes a risk profile that should be carried to term only if Ms. K
accepts responsibility for his existence. And she submits to this interpretation the
moment she makes her decision.

The Frame: Dont Trust Your Own Senses

Ms. Ks mother had given birth to her daughter without being bothered about
chromosomes, the probabilities of malformations and test results. For women of her
generation, pregnancy was not yet a condition that required special education or even
a decision. Like most women of her generation, Ms. Ks mother saw no reason to visit
a physician as long as nothing was wrong with her. The first physician she set eyes on
was the gynecologist at the maternity ward when she arrived at the clinic to give birth.
Until then, Ms. Ks mother entrusted herself to a midwife and was hopeful about her
unborn child. Her daughters experience is quite different. Only one generation later,
in the name of self-empowerment, pregnant women are warned not to trust their
own senses. They learn from magazines, television and friends that pregnancy is full of
hidden risks and must therefore be medically supervised and managed. Her hand-

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held pregnancy record lists potential risk factors that would immediately diagnose
her pregnancy as at risk. In the waiting room of the Human Genetics Institute, a
glossy brochure displays the developmental stages of a fetus. In amazement, Ms. K
looks at the misshapen creatures surrounded by tufts of shaggy hair. In the accompa-
nying text, a physician warns expectant mothers to avoid alcohol, cigarettes and
stress in order to minimize the risks involved in fetal development. Ms. K must learn
that trusting sensory reality is deceptive.
The geneticist spends most of their consultation time informing Ms. K of the
risks. He shows her a picture of wormlike structures and points out that these
chromosomes occasionally get mixed up during germ cell formation, as he calls it.
For instance, a child with three instead of two small st chromosomes would have
trisomy , or Downs syndrome. He explains that her child would then be mentally
disabled. On the risk curve rising steeply on the right-hand side of the paper, Ms. K
is situated right before this terrifying ascent. If she wishes to rule out this risk, he
recommends that she have an amniocentesis. Of course, he warns, she must know
that she would be taking a . percent risk of triggering a miscarriage. And from the
start, every pregnant woman has a so-called base risk of percent that her child
is not healthy. To impress this base risk on his pregnant client, he lists what might be
wrong with the child: cleft lip, open back, heart defect, genetic defects. Ms. K learns
that her child might have health problems even before it is born.

The Necessary Misunderstanding

The probabilities of abnormalities, increased risks, genetic defects: all sound quite
threatening to Ms. K. She assumes that the geneticist is talking about her pregnancy.
If Ms. K were aware that
Here, however, she is taken in by the serious misunderstanding that such counseling
the counselor was merely
inevitably provokes. Per definitionem risks cannot refer to a person of flesh and
attributing to her the
blood, but only to a constructed case; never to I or YOU in an everyday
probabilistic characteris-
statement, but only to a case from a statistical population.
tics of a ctive cohort
If Ms. K were aware that the counselor was merely attributing to her the
of pregnant women,
probabilistic characteristics of a fictive cohort of pregnant women, she would
she would probably leave
probably leave the room outraged. This misunderstanding explains why she is even
the room outraged.
listening to the geneticist in the first place. Only if she falls victim to the illusion that
the risk figures and probability curves say something about herself and her unborn
child can it seem logical for her to make the continuation of her pregnancy
dependent on them.
Ms. K is worried about her unborn child. No one can give her what she wants: the

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certainty that everything will be all right. The geneticist obscures the chasm between
her hope and the technical options he is offering. He turns her concern for her baby
into a need for information that statistical calculations and genetic test results are
intended to satisfy. Her hope for a healthy child becomes fear of calculable risks.
Only when she considers probabilities to be the measure of a threat to herself can the
tests appear as relief. The lab results, which clarify or rule out risks, only promise
She can only make an
her reassurance and certainty if she has learned to think of her child as calculable.
autonomous decision
Counseling turns wishes and worries into service needs.
when she sees her unborn
Before seeing the genetic counselor, Ms. K visited her obstetrician. By means of
child as a risk prole,
ultrasound, he gave his patient the first snapshot of her child. Ms. K is supposed to
as a faceless member of
believe that the shadows on the screen, visualized sonographic data, are an image of
various risk classes.
her unborn child. Now the geneticist requests that the pregnant woman completely
abandon reality: his statistical lecture calls into question not only her corporeality
but also the incalculability and uniqueness of her own being. He not only turns her
into a risk profile, he also urges her to do the same with her unborn child: She is to
see the future of her child in chromosome sets, rising risk curves and probability
tables. She can only make an autonomous decision when she sees her unborn child
as a risk profile, as a faceless member of various risk classes.

Decision-Making as Self-Empowerment
In the name of self-empowerment, the geneticist asks Ms. K to decide whether
she wishes to undergo amniocentesis or not. He does not wish to pressure her into
taking the test. On the contrary, he offers his pregnant client not only the option
of having the test but also the option of not having it. For him the option of having
an amniocentesis that could lead to a possible abortion is equal to what Ms. Ks
mother did without being compelled to make any decision at all. She brought her
child into the world without any ifs and buts. In the same way in which he
calculates the risks involved in a test, the geneticist calculates in advance the risks
that Ms. K is taking if she does not have an amniocentesis. Thus, the counselor
models her future in such a way that whatever subsequently happens can be seen
as the consequence of her decision.
The genetic counselor has imposed a burden on Ms. K that is historically unique:
She is to feel responsible for the outcome of her pregnancy. If Ms. K lets the
counselor persuade her that it is her task to make an informed and autonomous
decision about risk-encumbered test options, then she will leave the consultation
room with an unbearable burden.

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Learning about chances and risks creates the illusion that managing statistical
Learning about chances
probabilities gives us power over the future. This is the latent function that the
and risks creates the
counseling to promote autonomous decision-making has today: It mobilizes
illusion that managing
counseled clients to make decisions that are insignificant in terms of what they are
statistical probabilities
hoping for. After such a consultation, they find themselves in a pretty pickle: The
gives us power over
future has been presented to them as a menu of options from which they must
the future.
choose whether they want to or not. Counseling to promote self-empowerment
obliges them to feel responsible for what is done to them.

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