LESSONS FOR THE FUTURE? PROPHECY AND POLICY IN SPECULATIVE BIOETHICS By Ari ...

378 Pages·2014·2.22 MB·English

LESSONS FOR THE FUTURE?
PROPHECY AND POLICY IN SPECULATIVE BIOETHICS

By

Ari Schick

A DISSERTATION

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

Philosophy – Doctor of Philosophy

2014
ABSTRACT

LESSONS FOR THE FUTURE?
PROPHECY AND POLICY IN SPECULATIVE BIOETHICS

By

Ari Schick

For more than a decade, the field of bioethics has increasingly turned its attention to wide-ranging
discussions of possible future biotechnologies, such as those that might be used to determine the
genetic endowments of future offspring or to enhance existing people. Yet while the literature on
human biomedical enhancement has become a focal point of bioethical debate, few of the
technologies that stimulate this discourse have reached the point where they actually generate the
ethical questions that the literature addresses. This study offers a comprehensive analysis and
critique of speculative bioethics that builds on existing conceptualizations of two parallel modes of
bioethical discourse (prophetic and regulatory), and draws from literature outside of bioethics that
examines the social function of expectations regarding future technologies.
I begin by tracing various developments in bioethics that have given rise to the
enhancement discourse in its present form and survey some of the existing criticism that it has
drawn. I demonstrate the ways in which speculative bioethics goes wrong when exploring potential
future technologies and scenarios, and evaluate the utility of anticipatory bioethics research that
attempts to get ahead of expected future technological developments. In the course of developing a
robust theory of the nature and function of the prophetic and regulatory aspects of bioethics, I
establish that speculative explorations belong within the domain of the prophetic, not regulatory,
mode of bioethics.
I expand the critique by examining the roles that technological expectations play in driving
both biomedical research as well as public engagement with ethical issues in biomedicine. I argue
that many existing ethical explorations of possible future technological scenarios mistakenly
identify the object of ethical analysis as the actual possible future. Instead, it is the expectations
that drive public discussion and research agendas that are the proper object of scrutiny and
analysis. After probing the nature of this shortcoming and its consequences, I enlist alternative
approaches that are capable of critically assessing the moral implications of technological
expectations themselves.
Finally, I develop an integrated approach for exploring the possible future technological
scenarios found in speculative bioethics. Drawing on work in narrative ethics and the interface
between literature and bioethics, I offer a multifaceted model of ‘narrative competence,’
appropriate for analyzing the existing literature on human enhancement, as well as for pursuing
alternatives that could better advance useful modes of bioethical discourse and public deliberation.
Copyright by
ARI SCHICK
2014
Dedicated to the memory of Adrienne Asch, who enriched many lives and the world of bioethics.

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ACKNOWLEDGEMENTS

I am indebted to many teachers, mentors, and fellow students—too numerous to mention
individually—for all that I have gained from them. However, those whose contributions to my work
in bioethics have been particularly vital, and without whose help and support I would not have
completed this dissertation, deserve special recognition.
My involvement in bioethics began nearly a decade ago when Erik Parens graciously took
me on as a part-time intern at the Hastings Center. Working with him was an invaluable
experience that helped to set the course of my research. I have benefited from the erudition of all
the members of my doctoral committee, Len Fleck, Fred Gifford, Jim Nelson, and Dan Steel, and
have learned much from each of them. I am especially grateful to Jim, who, aside from chairing my
committee and directing this dissertation, was instrumental in securing the support that facilitated
my studies. As this dissertation neared its completion, I received much insightful feedback from
David Wasserman, a source of creative ideas and philosophical inspiration who has always been a
pleasure to work with.
Two institutions deserve mention as well: first, the Department of Philosophy and the
College of Arts and Letters at Michigan State University. My thanks to the deans, administrators,
and support staff who, in various capacities, helped my graduate studies to progress as smoothly as
possible. Second, for the past two years, I have been writing at the library of the Van Leer
Jerusalem Institute in an atmosphere that has been exceptionally conducive to my work. I am
grateful to the administration and staff of Van Leer for the use of the library and for obliging a
number of special requests.
I cannot imagine completing this work without the support of my family. My parents have
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been extremely supportive through the years, in ways large and small, ensuring that I could pursue
graduate studies without many of the pressures that are a frequent hazard of academic life. My in-
laws have likewise been gracious and helped to ease difficult transitions between New York,
Michigan, and Israel. My children, Saadyah, Noa, and Aviyah have changed my life in ways both
expected and unexpected, and have multiplied the good in my life many-fold.
Above all, this dissertation is the culmination of many years of love and support from my
wife, Shana. Without her patient encouragement, reassurance, and assistance I could not have
commenced or completed this work. Words cannot express how deeply I appreciate the many ways
she accommodates me while pursuing her own work. She has set the bar high as a dedicated
scholar and devoted parent. I hope someday to live up to her example.
Finally, I write these acknowledgments pained by the recent loss of my friend and mentor,
Adrienne Asch, to whom this dissertation is dedicated. I learned more from working with
Adrienne than in any classroom or from any book, and she supported and encouraged me in
innumerable ways over the past eight years. This dissertation feels complete only because I was able
to celebrate its completion with her.

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TABLE OF CONTENTS

LIST OF TABLES ..............................................................................................................................XII
LIST OF FIGURES .......................................................................................................................... XIII
CHAPTER ONE – INTRODUCTION .................................................................................. 1
I. Human Enhancement and Speculative Bioethics ........................................................................ 1
II. Should We Be Suspicious of Speculative Bioethics? ................................................................... 2
III. Critiquing Speculative Bioethics ................................................................................................ 5
a. Methodological Critique ........................................................................................................... 6
b. Public Interest Critique ............................................................................................................ 7
c. A Note on Purpose and Method .............................................................................................. 9
IV. Alternative Approaches to Speculative Bioethics .................................................................... 11
a. Regulatory and Prophetic Bioethics ....................................................................................... 11
b. Speculative Bioethics as a Reflective Discourse ..................................................................... 14
1. The goals of speculative bioethics ...................................................................................... 14
2. Methods for speculative bioethics ...................................................................................... 17
V. Description of the Chapters ...................................................................................................... 18
CHAPTER TWO – BIOETHICS UNBOUND: HUMAN ENHANCEMENT AND THE
EVOLUTION OF A DISCOURSE ...................................................................................... 20
I. From Positive Genetic Engineering to Human Enhancement .................................................. 21
a. Successes and Failures of the Human Genome Project ......................................................... 24
b. Transhumanism Enters the Mainstream................................................................................ 26
c. The Legacy of the Cloning Controversy ................................................................................. 34
II. From Thought Experiments to Likely Futures .......................................................................... 35
a. 1984: What Sort of People Should There Be?............................................................................... 36
b. 1996: The Lives to Come ........................................................................................................... 39
c. 2000: From Chance to Choice .................................................................................................... 41
d. 2011 and beyond: Beyond Humanity (and an Embarrassment of Riches) ............................. 44
III. From Reflective to Regulatory Modes of Thinking ................................................................. 47
a. Callahan: The Secularization of Bioethics ............................................................................. 47
b. Evans: The Rise of Formal Rationality ................................................................................... 50
c. Formal Rationality and the Rhetoric of Inevitability ............................................................. 55
d. Consensus Obviates Justification ........................................................................................... 57
IV. Closing Thoughts ...................................................................................................................... 59
CHAPTER THREE – TRESPASSING INTO THE FUTURE? A SURVEY OF THE
CRITICAL LITERATURE .................................................................................................. 61
I. Internal and External Critiques of Speculative Bioethics .......................................................... 61
a. What Sort of People Should Be Talking about the Future? .................................................. 62
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b. Bioethics’ Unseemly Technological Fixation ......................................................................... 65
c. Speculation Distorts Bioethical Deliberation ......................................................................... 67
1. Slouching toward policy ..................................................................................................... 67
2. Wallowing in enhancement fantasies ................................................................................ 70
3. Genetic enhancement is a myth ......................................................................................... 73
II. Nanoethics and the STS Critique of Speculative Ethics .......................................................... 75
a. A Brief History of Nanoethics ................................................................................................ 75
b. Foundational Differences between Bio- and Nano-Ethics .................................................... 79
c. Bioethical Skepticism toward Nanoethics .............................................................................. 83
d. Nordmann’s “If-and-Then” Critique ...................................................................................... 87
III. Closing Thoughts ...................................................................................................................... 91
CHAPTER FOUR – PROPHETIC AND REGULATORY BIOETHICS IN THE IMAGINED
FUTURE ............................................................................................................................ 92
I. Speculation across the Generations – 1974 to 2004 .................................................................. 92
a. ‘Neomorts’ and the ‘Bioemporium’ ....................................................................................... 93
1. Predictive failure ................................................................................................................. 93
2. Reflective success? ............................................................................................................... 95
b. The Just Distribution of Genes .............................................................................................. 98
1. Justice after the genetic revolution ..................................................................................... 98
2. The encroaching demands of a more just future ............................................................. 103
3. Reflective equilibrium in the reified future ..................................................................... 106
II. Alternatives to Regulatory Forays into the Future .................................................................. 110
a. Reflective Exploration ........................................................................................................... 110
b. Thought Experiments ........................................................................................................... 111
c. Intermezzo: An Unproductive Dialogue .............................................................................. 114
III. The Prophetic Voice in Bioethics........................................................................................... 121
a. Far-sighted and Reflective ..................................................................................................... 121
b. Activist and Critical .............................................................................................................. 124
c. Historical Memory, Shared Values, and Reflexivity ............................................................. 125
d. Utopian and Dystopian Visions ........................................................................................... 127
IV. Prophecy as Practice ................................................................................................................ 130
a. The Idea of Prophetic Bioethics ........................................................................................... 130
b. Prophecy and Policy: Complementary or Incompatible? .................................................... 132
c. Prophecy to Policy: From the Future to the Present and Back Again ................................. 133
d. Prophecy, Activism, and Moral Development ..................................................................... 136
IV. Closing Thoughts: The Varieties of Prophetic Speculation .................................................. 142
CHAPTER FIVE – THE FUTURE IS WHAT WE MAKE OF IT: ANTICIPATORY ETHICS
AND PUBLIC POLICY .................................................................................................... 145
I. Introduction: Carts and Horses ................................................................................................ 145
a. The Human Genome Project and the ELSI Program .......................................................... 146
b. Was the ELSI Program Successful? ...................................................................................... 148
c. Direct-to-Consumer Genotyping: A Test Case ..................................................................... 151
II. Plausible Goals and Putative Benefits ..................................................................................... 154
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a. Controlling the Future .......................................................................................................... 154
b. Preparing for the Future ....................................................................................................... 160
c. The Unverifiable Putative Benefit ........................................................................................ 167
III. The Nature and Scope of Regulatory Bioethics ..................................................................... 169
a. Strategic Planning vs. Muddling Through ............................................................................ 170
1. Why ELSI was misconceived ............................................................................................ 170
2. Regulatory bioethics: the art and science of muddling through ..................................... 171
3. Conflating strategic science policy with regulatory bioethics .......................................... 177
4. Strategic planning, plus consensus bioethics, equals regulatory approaches to speculative
futures .................................................................................................................................... 179
5. The illusion of consensus and the obfuscation of justification ...................................... 180
b. Indeterminacy and the Limits of Regulatory Processes ....................................................... 182
1. Prediction, speculation, and risk ...................................................................................... 182
2. Uncertainty and indeterminacy ....................................................................................... 186
3. The limited purview of regulatory bioethics .................................................................... 188
4. Indeterminate futures in prophetic discourses ................................................................ 189
c. Keeping Regulatory and Prophetic Questions Apart ........................................................... 191
1. The benefits of separation: IVF as a test case .................................................................. 191
2. Regulatory commissions and reflective discourse: separation may be more equal ........ 196
3. Speculation without prediction ........................................................................................ 198
IV: Closing Thoughts .................................................................................................................... 200
CHAPTER SIX – THE FUTURE IS WHAT IT MAKES OF US: EXPECTATION,
REIFICATION, AND MORAL FUTURISM IN SPECULATIVE BIOETHICS .................. 202
I. Problematizing Speculative Bioethics........................................................................................ 204
a. A Restatement of the Problem.............................................................................................. 204
b. The Purpose of Bioethics and the Mythic View of Biomedicine ........................................ 207
II. Expectations in Science, Technology, and Bioethics .............................................................. 213
a. Technological Expectations .................................................................................................. 213
1. Expectations and speech acts............................................................................................ 213
2. The function of technological expectations ..................................................................... 216
3. STS: constructive critique and an alternative model ....................................................... 218
b. The Nature and Function of Bioethical Expectations ......................................................... 220
1. Coordination within bioethics ......................................................................................... 220
2. Coordination with biomedical research .......................................................................... 222
3. Establishing bioethics’ relevance to biomedicine ............................................................ 225
4. Mediating between researchers and the public ................................................................ 228
5. Accountability for expectations ........................................................................................ 230
c. Babies by Design: Managing Expectations in the Realm of Mythic Science .......................... 234
III: Toward a De-reified Speculative Bioethics ............................................................................. 239
a. Technological Inevitability and the Dream of Anticipatory Agency ................................... 239
1. The future disconnected from the present ...................................................................... 239
2. The future imposed on the present ................................................................................. 245
b. An Ethics of Wishing ............................................................................................................ 249
c. Technology as Discourse ....................................................................................................... 253
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