Decision Trap

Silja Samerski

Description

The Decision Trap questions a dogma of our time: the assumption that genetic education empowers citizens and increases their autonomy. It argues that professional instructions about genes, genetic risks, and genetic test options convey a genetic worldview which destroys self-confidence and makes clients dependent on genetic experts and technologies. Part one of the book introduces the reader to the idea of genetic education. It clarifies the notion of the "gene" as it is commonly understood, and shows that, scientifically, the concept of genes as definable, causal agents is outdated. Part two of the book investigates the hidden curriculum of genetic education, using genetic counselling as a prime example. Genetic counselling is a professional service that aims to enable clients to make autonomous decisions about genetic test options and cope with the results.

Sujets

• Médecine
• Medical genetics

Informations

• Publié par: Andrews UK
• Date de parution: 15 juin 2015
• Nombre de lectures: 0
• EAN13: 9781845408305
• Langue: English

Extrait

Title page
THE DECISION TRAP
Genetic Education and Its Social Consequences
SILJA SAMERSKI
with a preface by
Barbara Katz Rothman



Publisher information
2015 digital version by Andrews UK Limited
www.andrewsuk.com
imprint-academic.com
Copyright © Silja Samerski, 2015
The moral rights of the author have been asserted.
No part of this publication may be reproduced in any form without permission, except for the quotation of brief passages in criticism and discussion.
Originally published in the UK by
Imprint Academic, PO Box 200, Exeter EX5 5YX, UK
Originally distributed in the USA by
Ingram Book Company,
One Ingram Blvd., La Vergne, TN 37086, USA
English translation by Nancy Joyce



Acknowledgment
I am grateful to many friends who have helped me to get the English book published: Mario Sagastume has patiently worked with me on the English book proposal and has helped me to get my ideas across in a language still foreign to me. Sajay Samuel and David Cayley have kindly revised my English and improved many paragraphs. Nancy Joyce has made the fluent and sound translation from German. And I thank Barbara Katz Rothman for her wise and beautiful preface.
Some material in this book had been adapted with permission from Samerski, S. (2014) Genetic Literacy: Scientific Input as a Precondition for Personal Judgement?, in Dakers, J.R. (ed.) New Frontiers in Technological Literacy: Breaking with the Past, New York: Palgrave Macmillan.



Preface to the English Edition by Barbara Katz Rothman
Choice, I have often pointed out, is not an alternative to social control, but a mechanism for achieving it.
This point is made, skilfully, dramatically, repeatedly, in this book. Decisions, also thought of as choices, are traps.
People enter these traps willingly. More than that - they eagerly seek entry. They are told decisions and choices are theirs to make, and all that is needed is rich and full information. With all the information, intelligent choices can be made, thoughtful decisions reached. Getting the information becomes a goal of its own, the path to proper decision making.
How can that be a trap? How can those choices be mechanisms for social control?
First, let’s start with the simplest examples of choice used to control. Let’s say you have a little child, and it is very cold and wet outside, and you want that child to put on a hat. “No!” baulks the child, “I don’t want to!” Force is an option, but it won’t be pleasant and it won’t be quick. There may well be a temper tantrum, torn or thrown hats involved, a bad way to start the day. Information might work on its own, depending perhaps on the age and certainly on the mood of the child - explain how you might catch cold if you get cold and wet. It’s been known to work, but... not so much actually in the real world. Pleading is rarely successful-”please, please be good and wear the hat” doesn’t often get the hat on. Bribery sometimes work, “incentivizing” choices - wear a hat and you can have a treat later. But choice - choice may well work best of all. Would you rather wear the blue hat or the red hat? To make this technique work even better, offer the choice before you even raise the issue of hat-wearing, before the option of hat-refusal even enters into the child’s mind. As the child pulls on a coat, or finishes the last of breakfast, ask what colour hats are there in the closet? Few children won’t be caught in that trap: one hat is grabbed, the others discarded, personal autonomy saved, the day saved, and the hatted-child is on the way out the door.
Is it fair to equate a manipulated child to a modern, autonomous patient? Obviously not, and we are surely well beyond the era of the paternalistic physician. And yet, there are just so many ways anyone can get anyone else to do anything: force, pleading, incentivizing, and educating. In medicine, and most especially in the area of genetic medicine, and perhaps most especially in German genetic medicine, there will be absolutely no discussion of force or of incentive. The history of eugenics is just too close and too painful to even think about using any formal authority to require or to entice people into using any genetic technologies at all. Pleading works well when personal relationships are involved: one can well imagine a mother pleading with her daughter to use certain prenatal testing or a wife with her husband; within the confines of familial relationships, there is little doubt that pleading - personal urging, “because I care about you and you about me” - has a role. But pleading will not, cannot, work in the clinical setting. Which leaves us with education and its proffered choices. Clinicians will give information, all the information they can muster, describing every possible hat in every available closet, with great clarity and deliberation, leaving the choices entirely to the clients.
The big questions offered by the new genetics make a lot of people uncomfortable: you are going to have a baby - do you want to make some choices about the kind of baby you will have? You are going to die of something eventually - do you want to know more in your youth about what that is likely to be in your old age? These are things to which many people would say no, would turn away, these are the paths they do not want to walk down. That is not what is usually asked: instead we are asked which tests we will choose to have prenatally, which screening and predictive tests we choose for ourselves and our not-yet-born, maybe not-yet-conceived, children. We are taught more and more about the kinds of tests available, the differences between them, so that we can make intelligent and thoughtful choices, autonomous choices.
When people hesitate, when they push back against the choices, more and more, ever non-directive education is on offer.
And again, go to the simple choices in life and consider when and how we use education to structure choices. If you want someone to pick you up at a train station, you don’t say “you do realize of course that you could have a fatal accident on the way? Here let me look up the numbers - these are the odds that you could lose control of the car and smash it; these are the odds that a little kid could dart out into traffic and you’d kill it; these are all quite small numbers, but... are you ok with taking that risk? Pick me up at 7?” Without making them think through all of what could indeed happen, without the actual risk numbers available to be explored, can you say they are making an “informed choice”? It sounds crazy, laughable, or perhaps sick to talk that way. But that is how “informed consent” counselling most often works. If the person wants what you want them to want, you give them whatever basic information might be required, and that’s that. If they want something else, you keep feeding more information to be very sure they are making an “informed” choice. We educate people who are acting not in accordance with what we, the educators, think an informed and intelligent choice should be. We do not continue to educate people who are making what we understand to be good, thoughtful choices.
At every level, from large scale public education programmes through to individual counselling sessions, education is used to shape the kinds of questions that will be asked, to direct our attention to some issues and away from others, to some values and away from yet others. People who know that a lot of people in their family have had this or that disease have some sense that the disease could strike them too, is part of the fabric of their lives. But start educating them about the genetic basis for the disease, the tests that could tell them if that disease-causing gene is in their own bodies, and the experience of risk becomes different. The risk moves from “out there”, in the world, or “on paper” in a family tree as one person says in this book, to an internalized part of one’s own body, begins to move from “if” to “when”. Dealing with risks that are “out there”, that happen, that could happen to oneself is one thing; dealing with flaws in one’s own body or one’s baby’s body, the genetic misprints the geneticist sees, is a very different project.
With education, with counselling, we move people from the one project - the inherent riskiness of life and the inevitability of death - to another: managing medical risks with currently available technologies.
It’s a trap.



Preface to the German Edition
“Autonomy”, “responsibility”, “choice” - these are the big catchphrases that dominate policy making today. In every situation citizens are called upon to make their own choices, regardless of whether they have just become unemployed, pregnant, or had a genetic counsellor predict a scary disease in their future. A host of experts have made it their business to guide us in the decision making process. The business of professional counselling, which has turned deciding into a service product, is booming. A broad array of educational and counselling services exist for the sole purpose of guiding citizens on the path toward freedom and autonomy. Their assumption is that people only need the right “inputs” to handle an intangible and technologized world.
My scepticism over this professional encroachment on deliberation and decision has been growing for a long time. More than ten years ago I agonized for the first time over counselling interviews in my dissertation: counselling interviews in which genetic counsellors educate pregnant women about the possible chromosomal aberrations and risks of deformity their embryo carries and the relevant testing options, and then strongly implore them to make a “self-determined decision”. How did it come about, I asked myself, that genetic cou