A Life (Un)Worthy of Living Reproductive Genetics in Israel

and Germany

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This work is dedicated to the late Prof. Wertz, a symbol of academic cooperation
and generosity, as well as to my beloved spouse Ido Dolev and our two boys,
Ori and Yoav, who are my pride and joy.
 TABLE OF CONTENTS

Acknowledgements xi

Foreword xiii

Chapter 1: Theoretical Background 1

Technology and Society 2
Technological Determinism and the Application
of Reproductive Genetics in a Glocal Context 3
“Life” as a Sociological Concept 5
Foucault; The Disciplining of “life” and of Future Mothers 7
Biopolitics and its Theoretiocal Elaborations 9
Medical Experts’ Definitions of the “Normal”
and the “Pathological” 11
The Sociology of Body and Nation 12
The Effect of Culture 15

Chapter 2: Methodology 19
Comparisons 19
The Qualitative Data and Sample 19
The First Survey 20
The Second Survey 21
Possible Biases of the Second Survey 22
The Interviews 22
Anonymity 25
The Texts 26
Who is not Represented in this Study? 27

Chapter 3: Getting to Know the Field of Reproductive Genetics

in Israel and Germany 29
A Historical Perspective 29
Human Genetics after the War in Germany 29
Human Genetics in Germany from the 1960s onwards 31
After 1948 (the formation of the state) in Israel 32
The Lasting Effect of the History of Eugenics in Both
Nations 34
Medical Genetics in Israel and Germany Today 35
The Occurrence of Genetic Congenital Malformations 35
vii
viii TABLE OF CONTENTS

Public Health Policy and the Prevention of “Birth Defects”

in Israel and Germany 37
Health Insurance in Germany and Israel 37
Prevention of “Birth Defects” 38
Population Screening Tests 41
The Public’s Utilization of Tests and Selective
Abortion Practices 43
Is there a Reduction in Genetic “Birth Defects”? 45
Public Opposition to Reproductive Genetics 46
Religious Thought, Eugenics, and “Playing God” 47
Feminists 50
Professional Guidelines and Ethical Discussion 51
Cost-benefit Calculations and Profit Motives in Israel
and Germany 53
Scientific Mentalité, and Attitudes towards Scientific Risks
in Israel and Germany 57
Conclusion 60

Chapter 4: Genetic Counselors’ Moral Practices 63

Why Study Genetic Counselors? 63
A Brief History of Genetic Counseling and its Non-directive
Ethos 64
Whom is Allowed to Council? 66
Survey Data: Method of Analysis 66
Variables 67
Findings 67
Selective Abortion and other Social-moral Dilemmas 72
What Determines Counselors’ Moral Practices? 73
Discussion 73
The Effect of Nationality 75
The Effect of Place of Training 77
The Effect of Medical Specialty 77
The Effect of Gender 78
The Effect of Religiosity 79
The Effect of Time 79
Conclusion 81

Chapter 5: Abortions on Embryopathic Grounds: Policy

and Practice in Israel and Germany 83
Reproductive Genetics and the Abortion Debate 84
Law on Paper versus Law in Practice Concerning “Late”
Abortions on Embryopathic Grounds in Israel
and Germany 85
The Practice of “Late” Selective Abortions in Israel
and Germany 87
 TABLE OF CONTENTS ix

The Role of Professionals in Aborting on Embryopathic

Grounds 88
Genetic Counselors in Israel and Germany: Diverse Views
on the Abortion Debate 91
Framing the Abortion Debate in Israel and Germany:
Historical, Religious, Legal and Political Contexts 94
Political History of the Abortion Laws 94
Germany 94
Israel 97
Religious Issues in Germany and Israel 98
Related Reproductive Laws 101
Conclusion 103

Chapter 6: Sex Chromosome Anomalies (SCAs) in Israel

and Germany: Assessing “Birth Defects” and Medical
Risks According to the Importance of Fertility 105
What are SCAs? 105
Statistical Props and Medical Risks 106
Counseling for SCA in Israel and Germany 107
The Importance of Fertility in Israel and Germany 112
Fertility and New Reproductive Technologies (NRTs)
in Israel and Germany 115
Conclusion 116

Chapter 7: “Wrongful Life”, in the Eyes of the Law, the Counselors

and the Disabled 119
What are “Wrongful Life” and “Wrongful Birth” Suits? 119
German Legal System’s Position 121
Israeli Legal System’s Position 122
Genetic Counselors and “Wrongful Life”: The Philosophical
Concept and the Legal Threat 124
The Positions of Disability Organizations in Israel
and Germany 126
Conclusion 129

Chapter 8: The Conflicts Between Individuals, Families and Society,

as Well as Between Different Family Members, Embodied
in Reproductive Genetics 131
Philosophical Traditions and Local Understandings
of Family Ethics: Is there a Conflict between the Child
to be and Her Family? 138
Counselors’ Views Concerning Parents who Choose to Give
Birth to Children with Disabilities 142
Conclusion 145
x TABLE OF CONTENTS

Epilogue: Biopolitics at the Beginning of Life 147

Life and its Distinct Cultural Meanings 149
Zoē and Bios Biopolitics at the Beginning of Life 153

Appendices 157

Bibliography 177

Index 193
 ACKNOWLEDGEMENTS

It is a great pleasure to acknowledge all the people in Israel and Germany who
contributed to this research throughout its different stages and helped me to accom-
plish the work. First among them I wish to thank Yehouda Shenhav and Haim
Hazan, who supervised my Ph.D. dissertation, for their tremendous intellectual
inspiration ever since I joined the department for Sociology and Anthropology at
T.A. University. To Yehouda Shenhav I am grateful for an enormous contribution
to this work, in all its theoretical and practical ups and downs, for his excellent
critical reading and above all, for being a caring friend and mentor. Haim Hazan
has always been there to support and guide me with his brilliant observations,
which helped me to frame my thoughts and with his outstanding humor, wisdom
and encouragement for which I wish to thank him. I am deeply thankful to Rivka
Carmi, who encouraged me to study her field of medical genetics, for her continual
support and open mindedness to a sociological way of thinking. Hanna Herzog has
always assisted me with caring advice and trust in the importance of my work, for
which I am very grateful.
I would like to thank many people in Germany, who have made this research
possible, as well as making the time my family and I spent in Cologne pleasurable.
First of all I would like to thank Ute Deichmann, who helped me intellectually,
practically and morally and became my good friend as a wonderful by-product of
this project.
Similarly, I wish to thank Benno Mueller-Hill for his support, for our interesting
talks and for his courageous writing, which inspired this study. Marcus Paus, who
was my assistant in Germany, made my encounter with a foreign society easy and
fruitful. He was someone to consult on every possible matter and his advice was
always of the best kind. Marcus Paus, Ulla Gelbert and Kornelia and Rudolph
Knuebel have been like a family to me while I was staying in Germany, for which
I am grateful.
Furthermore, I would like to express my deep gratitude to a network of colleague-
friends who guided my work. I am thankful to Barbara Prainsack for her brilliant
reading and for a very precious friendship and to Sigal Goldin, Hagai Boaz, Noga
Weiner, Nurit Kirsh, Nick John, Shiri Shkedi, Carmel Shalev, Michal Frenkel,
Shoham Melamed and Shay Lavi, for providing me with an intellectual support
group and companionship. I am also grateful to Eva Illouz for helping me to put
things together in the early stages of this work and to Larissa Remennick and Ursula
Naue for their valuable comments on different parts of this work.
I wish to thank Nadav Gabai, Svetlana Bolotin, Yasmin Alkalai and Amit Kaplan
for their support with the statistical calculations and Orna Donath for helping me
xi
xii ACKNOWLEDGEMENTS

to put some order into the bibliography. I am thankful also to Seffi Stieglitz for her
endless care and support throughout my years at TA University.
Additionally, I wish to thank all the German and Israeli genetic counselors who
invited me into their offices and homes and gave me so much of their time and
consideration. Likewise, I wish to express my gratitude to all the counselors who
took the time and effort to fill out a long questionnaire they received by mail from
a complete stranger. Without them, this work would not have been possible. Zully
Kohan, who headed the Israeli organization of medical geneticists, has offered me
much help, for which I wish to express my appreciation.
Outside the academic world, I owe an enormous debt of gratitude to Ido Dolev,
my deeply beloved spouse, for sharing my life, for following me to Germany and for
supporting me throughout those years. Moreover, I wish to thank my dear parents
Gad and Ilana Hashiloni, for their endless love, trust and support. Last but not least,
I am grateful to the one and only Angie Silva, my children’s nanny.
For funding this project, I am thankful to the Shapira Scholarship Trust awarded
by the University of TA, to the Chutik scholarship, awarded by the Women’s
Studies Forum with the NCJW, to the DAAD (German Academic Exchange
Service) short-term scholarship and to the David Horovitz Research Institute on
Society and Economy Scholarship.

Yael Hashiloni-Dolev
 FOREWORD

A few years ago, at the same time that I was searching for a topic for my Ph.D.,
I was also planning to become pregnant for the first time. As an educated upper-
middle class Israeli, apart from following medical advice and taking folic acid before
getting pregnant, everybody around me also went for genetic testing, either prior to
pregnancy or in the first stages of pregnancy. The idea of a genetic test reminded
me that 29 years ago, before having me, my parents went to a genetic counselor for
advice. The reason for their worries was that a year before deciding to have another
child (which turned out to be me) my eldest sister, then aged 10, was diagnosed with
diabetes. Thus, my parents wanted to know the chances of their future children getting
the same disease. Being told that the chances were low, they decided to have me.
And here I was 28 years later. What would I do if a genetic test existed which
would tell me whether my fetus is prone to develop diabetes? Would I consider
abortion? Could I theoretically abort my beloved sister, who is so many other things
besides a diabetic? And what would become of me if my sister did not exist? Would
I be the same person at all?
Luckily for me, no genetic test for diabetes exists and I did not have to take
difficult decisions. Yet, being intimately familiar with a chronic disease made it
emotionally and morally difficult for me to take genetic tests for conditions with
which I was basically unfamiliar at that time. Yet, I realized my difficulties were
not widely shared by others in my community, who largely accepted reproductive
genetics as a scientific blessing, which might (for a while) raise the anxiety level
of a pregnant woman but on the whole promises a brighter future for individual
parents and families, as well as for society as a whole. Going to the library of
social sciences and looking for materials about genetic counseling and Israel, I
was shocked to find out how correct my intuition was and how exceptional the
Israeli public and professional attitude to reproductive genetics was. The most
comprehensive comparative study looking into this issue was the study of Wertz and
Fletcher (Wetrz and Fletcher, 1993–95) which compared the opinions of geneticists
in 37 nations around the world, concerning ethics and genetics. Since at that time
Dorothy Wertz had only published a few articles based on the international survey,
I had written her asking to learn some more about it.
The following data (Table 1) is extracted from the materials she sent me:
These data simply shocked and amazed me, as it demonstrated not only that
Israeli geneticists were shown to be extremely enthusiastic about the personal
and social uses of reproductive genetics, but also that German geneticists were
found to be extremely cautious concerning the same medical technology, its uses
and desirable social outcomes. In fact, Wertz and Fletcher’s findings revealed that

xiii
xiv FOREWORD

TABLE 1. The Percentage of Geneticists Agreeing with Various Statements about the Desirable Use of
Reproductive Genetics in Israel, Germany and the US

The Statement Israel Germany USA

An important goal of genetic counseling is to 14% 0.2% 0.5%

reduce the number of deleterious genes in
the population.
Before marriage, responsible people should 73% 23% 44%
know whether they or their prospective
partner carries a genetic disorder that
could be transmitted to their children.
People at high risk for serious disorders 38% 13% 10%
should not have children unless they use
prenatal diagnosis and selective abortion.
A woman should have prenatal diagnosis if 68% 34% 38%
medically indicated by her age and family
history.
It is not fair to a child to bring it into the 68% 18% 40%
world with a serious genetic disorder.
It is not fair to a family’s other children 59% 10% 22%
knowingly to have a child with a
disability.
It is socially irresponsible knowingly to 68% 8% 26%
bring an infant with a serious genetic
disorder into the world in an era of
prenatal diagnosis.
The existence of people with severe 10% 38% 24%
disabilities makes society more rich and
varied.
N 23 255 1084

Israeli and German geneticists were placed on two extremes, one enthusiastic, the
other halfhearted, concerning the uses and outcomes of reproductive genetics, while
geneticists from all other “advanced liberal societies” (and hence the comparative
inclusion of the US in Table 1) were placed somewhere between those two poles.
These findings made me curious to learn more about Israel and Germany. The
first being my home land, the second, being the place of origin of three of my
four grandparents and a country in which I had spend two influential years of my
adolescence. And so, the dramatic differences between the two societies, combined
with my personal background and familiarity with both of them, made me decide
to make this initial curiosity the topic of my Ph.D. research. I thus became eager
to answer questions such as: What is it about Israeli society that makes it endorse
reproductive genetics with such enthusiasm and without criticism? What makes
Israeli women say yes to prenatal genetic diagnosis and what makes the attitudes
of Israeli geneticists different from their counterparts in other “advanced liberal
societies”? Likewise, I wanted to understand what makes German geneticists a
worldwide exception in their cautious endorsement of updated reproductive genetics,
 FOREWORD xv

and a completely opposite picture of Israeli geneticists? What is the role of German
history with its murderous racial politics (whose major victims were of course the
Jews, who now make up the majority of the Israeli population), in explaining these
findings and are there other factors besides the most obvious one of history, which
can improve our understanding of this phenomenon?
In a second e-mail to Prof. Wertz I had asked her to learn more about the specific
findings from Israel and Germany. To my great surprise and joy, she sent me all
the raw data collected in these countries and encouraged me to further analyze it in
my own research. I was now left with the question of where was I going to look
for explanations for the reported differences and what is going to be the focus of
my own work?
Seminal studies concerned with PND (prenatal diagnosis) like those of Rapp
(1999) and Katz-Rothman (1986), focused on the experience of women with prenatal
genetic diagnosis. As Rapp writes, these women turn into moral pioneers. Situated
on a research frontier of the expanding capacity for prenatal genetic diagnosis,
they are forced to judge the quality of their own fetuses and to make concrete and
embodied decisions about the standards for entry into the human community (Rapp,
1999). However, for the purpose of my own study, German and Israeli women
seemed to be too internally diversified as groups for me to compare. Moreover,
what I really wanted to understand was not the way women justify their actions
and describe their experiences, issues so brightly described by Rapp and Rothman.
Rather, I wanted to primarily learn about the institutional and cultural premises
and constraints that are shaping women‘s experience, most of the time without
their awareness, and with what I consider to be a false claim about their supposed
autonomy, since in fact, women’s options are always constrained both by the
value-laden technology itself and by their society’s prevalent ways of using this
technology.
Thus, I decided to put genetic counselors, who are the first contact most people
have with what may be the most personal of all the advances of the genetic
revolution, under the spotlight of my work. Belonging to the same international
professional culture and holding the same knowledge, Israeli and German counselors
have very much in common and yet, their opinions differ so sharply. Thus, the focus
of my work became studying how scientific knowledge is being played out against
a background of national differences and describing how local culture is shaping
genetic counselors’ practice and knowledge, and vice versa. What I found out is that
cultural ideas about fetuses, normality, health risks, fertility, science and progress,
suffering, family responsibilities and the lessons to be learned from history, create
very different worlds of reproductive genetics in both countries under study, which
adhere to a dramatically different understanding of the cultural concept of “life” or
of “a life (un)worthy of living”.
Thus, in line with contemporary thought in the sociology of science and
technology, this research is an instance of how science, as a field of knowledge
and practice, is culturally embedded and is not above, outside or prior to culture and
xvi FOREWORD

for how the powerful universal explanatory claims and technological intervention
of science are continually constructed and undercut by local cultures and bodies.
Moving towards the end of this foreword, I now wish to remark about the uses
of language in this work.
In the tradition of the sociology of health and medicine and of the body, this work
problematizes terms like “birth defects”, “genetic illness”, “late-term abortions”,
“selective abortion” (these abortions are also commonly referred to as “therapeutic”,
“medical” or “eugenic” abortions, as they all apply to wanted pregnancies, which
are terminated due to the fetus’ medical condition) and even “life” itself. Putting
such terms in inverted commas serves to point out the difficulty of drawing an
objective or “scientific” line between what is a unique trait or a special condition
and between diseases or between “early birth” and “late abortion”, which in other
words, is the line between a fetus that is entitled to protection and a fetus that is
not, since its future life is considered unworthy of living.
In doing this, I do not wish to totally abandon the biological reality of disease or
of the different stages of pregnancy, but rather to focus attention on the fact that
biological “realities” and permissible acts upon human bodies, are always socially
constructed. Furthermore, by questioning such terms, I wish to respect the language
and politics of the “abnormal” and the “disabled” themselves.
Another word that I do not often use in this work is eugenics. This is because
this term is contaminated by its history (which is itself diversified) and hence, it
nowadays often operates as a “buzz word”, which serves to block a contemporary,
open, moral debate about the current uses of reproductive genetics (Koch, 2004;
Paul, 1992; Pritchard, 2005; Novas and Rose, 2000). As I believe that contemporary
reproductive genetics has both its blessings and its burdens (Hadley, 1998) as it
is both liberating and discriminating and constraining at the same time, I prefer
using the term reproductive genetics and not more critical and biased terms like
“voluntary eugenics”(Wertz, 1998) or “free-market eugenics”. This of course does
not mean those terms do not portray large parts of the picture of contemporary
reproductive genetics, only that they overlook other important parts of the picture,
which I do not wish to ignore. Yet, while writing about the past, the term “eugenics”
is obviously more appropriate.
The discussion about the uses of language is obviously a discussion about moral
attitudes and hence, it leads me to the concluding remarks of this foreword, which
have to do with my personal moral judgments. Obviously, what initially made
me research this topic was my uneasiness with the practices of Israeli society,
with its intolerance towards the genetically deviant and its lack of critical thinking
about the moral conflicts embodied in reproductive genetics. Yet, as the research
advanced (and I became the mother of two boys) and after getting to know the
German field of reproductive genetics, things ceased to be so simple. Whereas
Israeli women are generally actively recruited (one may even say: seduced) to take
genetic examinations and even to abort fetuses which are, (or are suspected to
be) “genetically abnormal”, their German counterparts usually simply do not know
or know very little about the options opened up by this new technology. Hence,
 FOREWORD xvii

German women today give birth to abnormal children who could have been quite
easily detected in uterus but their mothers (and fathers) were never exposed to an
offer to take the relevant tests. Both situations are troubling to me. Therefore, after
thoroughly studying this issue, I cannot take sides with either the strong supporters
of reproductive genetics or with its opponents, which all seem to me to be blind
to some aspects of human suffering. Thus, I will not take a normative position
on the act of prenatal genetic diagnosis itself. However, this does not mean I
intend to ignore the moral realm altogether. On the contrary, I intend to engage
myself with moral questions by contributing to the public debate about genetic
medical technology and by pointing to the different options that post industrialized
societies offer to their members, regarding the uses of reproductive genetics. This
is especially important because science usually runs ahead of our social ability to
make moral judgments about how far technology should be allowed to reconstruct
our bodies and society (Beck, 1992), and since science and technology force us to
rethink our concept of “life”, a concept which is both natural and cultural. Hence,
the modest purpose of this study is not to support any side or to offer guidelines
for policy makers, but rather to shed light on the very difficult moral dilemmas
embodied in reproductive genetics and on how two different post industrialized
societies handle them.
This volume deals with the subject matter as follows
Chapter 1 investigates how “life” is managed in our modern technological
era. To begin with, it looks into the relationship between technological change
and social change, as it studies the institutional and cultural forces with which
a medical innovation is confronted in the process of its implementation within
different societies. Subsequently, the chapter discusses the interplay between global
professional knowledge and culture (that of reproductive genetics and of genetic
counselors) and local cultural-medical definitions. Consequently, it discusses “life”
itself as a socio-cultural concept. The chapter next reviews the work of Michel
Foucault, which laid the foundation for a critical discussion of the management
and disciplining of “life” through modern bodily techniques. However, Foucault’s
thesis is somewhat problematic when applied to the study of how the concept
of “life” is actually constructed in a specific social context and a distinct late-
modern cultural environment. This deficiency requires the application of additional
theoretical frameworks to understand the different forms that the “politics of the
beginning of life” take in Israel and Germany. A Sociological discussion of the
normal and the pathological, as well as of Mary Douglas’ notions of the relationship
between “the private body” and “the body politic”, together with Rose’s ideas
on present-day “politics of life itself” and Giorgio Agamben’s emphasis on the
exclusion of life in modern societies, fill this gap and help the reader to follow the
theoretical outline of the book. In its conclusion the chapter turns to explaining this
book’s cultural perspective and its choice of analytic tools to study the delicate and
problematic concept of “life” within the two studied societies.
Chapter 2 lays out the methodological foundations of this study’s comparative
empirical research. These are three-fold:
xviii FOREWORD

A. Quantitative analysis of 295 questionnaires dealing with reproductive genetics

that were responded to by genetic counselors in Germany and Israel in two
time periods. The first data pool is based on materials collected by Wertz and
Fletcher in 1993–95 as part of their cross-national study of ethics and genetics,
which I extracted and recoded. The second database is a partial replication of
the original study I conducted in 2000–01.
B. Qualitative analysis comprised 32 in-depth interviews with Israeli and German
genetic counselors.
C. Textual analyses of legal, professional and newspaper materials.
Chapter 3 is dedicated to getting to know the field of reproductive genetics
in both nations. It starts with an historical analysis of the evolution of Israel
and Germany’s reproductive genetic fields. The legislative, institutional, cultural,
economic, religious and social aspects of these two societies are explored as the
main argument links the political logic of reproductive genetics to the idiosyncratic
history of each nation. More specifically, it discusses how actors involved in the
field of reproductive genetics in Israel and Germany shape a different perspective
to the disturbing question of what is a life (un)worthy of living?
Chapter 4 portrays the major findings of the genetic counselors survey in Israel
and Germany. Its findings show Israeli counselors to be far more supportive of
selective abortions than their German counterparts. Looking for the social factors
behind these differences, the paper examines the effects of the counselors’ cultural-
national, institutional and personal backgrounds on their attitudes to different
issues commonly understood as relevant for genetic counselors’ moral practices,
such as abortion, eugenics, disability, patient autonomy and the rational-scientific
planning of life. It concludes by arguing that: A. Despite the nondirective ethos of
genetic counseling around the world, professional practices strongly resonate with
their cultural context; B. Cultural-national and religious factors affect counselors’
practices over and above structural and professional differences, such as place of
training and professional sub-categorizations and personal characteristics, such as
gender, age and years of professional experience; C. In contrast to theories that
understand science and technology to be powerful social tools, which open up
options that almost deterministically become obligations later on, the findings of
this survey suggest that the passing of time has not relaxed counselors’ moral norms
but rather made them somewhat more critical of their practice and its promises.
Chapter 5 discusses the only “remedy” for abnormalities found in fetuses that
reproductive genetics can offer today; namely selective abortions. It investigates the
different practices of selective and “late” selective abortions in both societies. Its
major finding is that “late” selective abortions are far more common in Israel than
in Germany. However, it is argued that this difference cannot be attributed solely
to the legal system, since both the Israeli and the German abortion laws, despite the
cultural differences that are registered in their rhetoric, open quite a wide door for
“late” selective abortions. Thus, the chapter argues that “late” selective abortions
are far more common in Israel than in Germany due to the professional’s mediation
 FOREWORD xix

of this process, which is conditioned by local understandings of “viability” and of

maternal and fetal relationship and rights.
Chapter 6 discusses a specific group of genetic anomalies, namely sex
chromosome anomalies (SCAs), whose major manifestation is future infertility. Its
major finding is that the issue of whether SCAs are perceived as a highly risky
medical pathology or as a normative variance is related in both cultural spaces
to assumptions about the importance of fertility in human life. Whereas in Israel
parenthood and the reproduction of the ‘national womb’ is understood to be what
human life is all about, German adults do not share this assumption. Accordingly,
German counselors do not support abortions on the grounds of SCAs, in contrast
to their Israeli counterparts, who understand infertility to endanger the worthiness
of life and thus also to entail a higher medical risk.
Chapter 7 examines the legal responses to the notion of “wrongful life” in Israel
and Germany and shows that whereas the Israeli legal system has declared some
forms of life to be “wrongful”, the German legal system has not. Furthermore, it
shows that this diverse understanding of the bio-cultural concept of “life” charac-
terizes not just the German and Israeli legal systems but also the positions of
genetic counselors and disability organizations in both countries. Thus, the profes-
sionals in each state seem to accept the typical logics of justification found in their
respective societies concerning the moral dilemmas associated with the concept of
a life (un)worthy of living, as far more Israeli than German counselors believe
some forms of life to be unworthy of living. Likewise, German disability organiza-
tions reject the idea of “wrongful life” and its derivatives, namely genetic tests and
selective abortions, as they tend to glorify life with disability and to fear selective
abortions devalue their own lives. Alternatively, Israeli disability organizations pose
no opposition to the practice of reproductive genetics, and its consequences.
Chapter 8 looks at how the concept of a life (un)worthy of living is incorporated
into discussions about the “good society”, family responsibilities, the relationship
between generations and a moral humanistic ethos. Its findings demonstrate that
whereas most Israeli counselors believe the good society should be composed of
a “healthy” population, many of their German counterparts believe the opposite
to be true. Thus, the conflict between individuals and society concerning this
matter is formulated in a contradictory fashion. German counselors imagine a
conflict between individuals’ wish to avoid having abnormal children, and society’s
need for genetic diversity and tolerance, as opposed to Israeli counselors who
imagine a conflict to result from certain parents’ insistence on carrying problematic
pregnancies to term, at the expense of burdening society. This difference is further
complicated by the two society’s understandings of the potential conflict between
the future child and her family, embodied in reproductive genetics. The repeating
themes in the German discourse concerning parents’ choice to accept children with
genetic “defects” are that those parents are moral and psychological heroes. By
contrast, in Israel, parents’ choice to carry problematic pregnancies to term is mainly
understood by genetic counselors not only as a social wrong, but also as unfair to
the future child and its siblings.
xx FOREWORD

Epilogue draws upon Agamben’s discussion of the ancient Greek terms that
served to describe what we now call “life”; zoē, which expressed the simple fact
of living common to all living beings (animals, men or gods) and bios, which
indicated the form or way of living proper to an individual or a group. Accord-
ingly, the epilogue rereads the German and Israeli politics of life by asking how
these different “advanced liberal” societies incorporate zoē and bios within their
bio-politics and thus how their balancing of zoē and bios affect their differential
practices of reproductive genetics. Consequently, the Israeli hegemonic moral order
concerning “life worthy of living” is described as “bios bio-politics”, in which
qualified life begins after birth and even then must be characterized by more than
the simple fact of biological existence. On the other hand, the current German
hegemonic moral order is described as “zoē bio-politics”, in which life begins upon
fertilization and in which all types of life are considered to be politically qualified.
The new concepts of “zoē bio-politics” and “bios bio-politics” are suggested to
serve for a less culturally-bound future study of situations in which contemporary
societies have to decide about the borders between life and death and about future
technological manipulations of life and their effect on what it means to be a human
being who is entitled to social protection.