Scientific utilisations of reproductive tissues:“good eggs”, women and altruism

300 Pages·2014·3.38 MB·English

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Scientific Utilisations of Reproductive Tissues:
“Good Eggs”, Women and Altruism

Margaret Boulos B.A. (Hons)

A thesis submitted in fulfilment of the requirements for the
degree of Doctor of Philosophy

Department of Sociology and Social Policy
Faculty of Arts and Social Sciences
The University of Sydney

2014

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Author’s declaration
This thesis is my own work and does not incorporate, without acknowledgement, any material
previously submitted for a degree or diploma in any university. It does not contain any
material previously published or written by another person where due reference is not made in
the text.
The following committees approved the collection of data discussed in this thesis: The
University of Sydney’s Human Research Ethics Committee (HREC) and the Sydney West
Area Health Service Human Research Ethics Committee, Westmead Campus (EC00152). The
names of all research participants have been coded with pseudonyms to protect their
anonymity.
Margaret Boulos
29 May 2014
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Acknowledgements

I was very fortunate to receive a generous stipend for 3 ½ years of my candidature and this,
along with the entire research project, was funded by an Australian Research Council Linkage
Project Grant ‘Human Oöcytes for Stem Cell Research: Donation and Regulation in
Australia’ – LP0882054.

My candidature has been a wonderful lesson in clarifying my goals and ambitions,
understanding the possibilities of collaboration and developing my own authoritative voice. I
am grateful to the project’s principal investigators, Cathy Waldby and Ian Kerridge who were
instrumental in the development of this dissertation and whose demonstrations of integrity
and honesty have been impressive. I wish to thank Professor Mike Michael who provided
very important insights and comments in the final months. Also, thank you to Tristan Enright
who was very helpful in clarifying my ideas.

My peers at Sydney University have also been incredibly important during this time and in
particular Dr Franklin Obeng-Odoom has demonstrated a level of faith in me, this process and
life which is truly inspiring. I know the words ‘thank you’ aren’t enough.

My heartfelt thanks go to mum Demiana, step-father Fakhry and aunt Raheel who were
always supportive and encouraging. Also to Sr. Mary Reaburn for her kind words.

Finally, to G.R. Lee who always gave me wonderful insights as well as motivating and
inspiring me to remain positive and close this chapter of my life.

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Abstract

The lack of available good eggs – fertile and mature oöcytes – for the technique of Somatic
Cell Nuclear Transfer (SCNT) poses interesting sociological questions regarding the conduct
of promising science. This thesis examines current debates regarding whether women should
donate oocytes or be paid. A payment system is expected to increase the number of oöcyte
providers by providing an impersonal rather than personal incentive: cheaper fertility
treatment or interest in the therapeutic benefits of SCNT research. The contemplation of a
payment system marks a shift from Titmuss’s model of altruistic tissue donation. However,
this contemporary debate continues to insist that the ideal donor is disinterested in some way:
by giving without economic or therapeutic recompense. In order to explore these issues, I
report on empirical data collected through interviews and focus groups. Three cohorts were
recruited: fertility patients, reproductive oöcyte donors and ‘healthy’ donors. Interviews and
focus groups were employed to provide insight into practical contexts of providing oöcytes
and embryos. I found that providing oöcytes for SCNT research is unappealing because good
eggs are essential to achieve one’s maternal aspirations and the process of oöcyte extraction is
perceived as requiring an extraordinary amount of physical and emotional discipline on the
part of the donor. However, the results indicate that these concerns are mitigated when oöcyte
and embryo provision occurs for a personal incentive. This affective framework—the
identification of a specified benefit or beneficiary—can change perceptions of effort, risk and
reward. A woman may be transformed into a ‘good egg’ – a donor providing social benefit –
if there are concrete, rather than abstract, dimensions to the process of scientific research.
Hence, these findings indicate that connections between femininity and altruism are flexible
and I sustain this claim by discussing the concept of discretionary reciprocity. Furthermore, I
argue that concerns regarding payment reveal deep-seated cultural anxieties about donor
autonomy and motivation. Money may be regarded as an impersonal incentive and its
advocates recall the figure of the citizen who should behave as disinterested—detached from
his or her personal benefit. However, for the participants in this study, payment represents an
inappropriate motivation on which to base contributions in scientific research. I show that that
contributions to science are interested and occur in relationship between an individual, the
tissue and the collective the research claims to benefit.

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List of Figures

Figure 1, The technique of somatic cell nuclear transfer (SCNT) ........................................... 14

List of Tables

Table 1 - outline of each cohort in the study ............................................................................ 97

Table 2 - Fertility Clinic Recruitment (first and second rounds) ............................................. 98

Table 3: Reasons for exclusion (first and second rounds) ........................................................ 98

Table 4 - Cohort One Age Distribution .................................................................................. 104

Table 5 - Cohort One Education Attainment .......................................................................... 104

Table 6 - Cohort Two Age Distribution ................................................................................. 105

Table 7 - Cohort Two Educational Attainment ...................................................................... 105

Table 8 - Cohort Three Age Distribution ............................................................................... 106

Table 9 - Cohort Three Educational Attainment .................................................................... 106

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Table of Contents

AUTHOR’S DECLARATION --------------------------------------------------------------------------------------- I
ACKNOWLEDGEMENTS ------------------------------------------------------------------------------------------ II
ABSTRACT ------------------------------------------------------------------------------------------------------- III
LIST OF FIGURES ------------------------------------------------------------------------------------------------ IV
LIST OF TABLES ------------------------------------------------------------------------------------------------- IV
TABLE OF CONTENTS -------------------------------------------------------------------------------------------- V
GLOSSARY ------------------------------------------------------------------------------------------------------ VIII
CHAPTER ONE ----------------------------------------------------------------------------------------- 1
AIM ---------------------------------------------------------------------------------------------------------------- 3
CURRENT FIELDS OF LITERATURE ----------------------------------------------------------------------------- 4
TOWARDS AN ANALYTIC FRAMEWORK ----------------------------------------------------------------------- 5
STATEMENT CLARIFYING RELATIONSHIP BETWEEN PHD AND ARC-FUNDED PROJECT ---------------- 6
THESIS OUTLINE -------------------------------------------------------------------------------------------------- 8
CHAPTER TWO: REGULATORY TRAJECTORIES OF SCNT RESEARCH -------- 11
INTRODUCTION -------------------------------------------------------------------------------------------------- 11
WHAT ARE STEM CELLS? -------------------------------------------------------------------------------------- 12
WHAT IS SOMATIC CELL NUCLEAR TRANSFER? ------------------------------------------------------------- 13
FEMALE REPRODUCTIVE BIOLOGY --------------------------------------------------------------------------- 15
ASSISTED REPRODUCTIVE TECHNOLOGIES (ARTS) AND STEM CELL RESEARCH ---------------------- 16
LEGISLATING STEM CELL RESEARCH ------------------------------------------------------------------------- 17
THE UNITED KINGDOM ---------------------------------------------------------------------------------------- 18
AUSTRALIA ------------------------------------------------------------------------------------------------------ 20
THE IVF-STEM CELL INTERFACE ----------------------------------------------------------------------------- 23
CURRENT KNOWLEDGE REGARDING OÖCYTE PROVISION FOR SCNT RESEARCH ---------------------- 24
CONCLUSION ---------------------------------------------------------------------------------------------------- 28
CHAPTER THREE: PRINCIPLE-BASED APPROACHES REGARDING THE
SCIENTIFIC UTILISATION OF WOMEN’S REPRODUCTIVE TISSUES ------------ 29
INTRODUCTION -------------------------------------------------------------------------------------------------- 29
BIOETHICAL DEBATES REGARDING THE PROVISION OF OÖCYTES TO SCNT RESEARCH -------------- 30
WOMEN AND VULNERABILITY -------------------------------------------------------------------------------- 37
TISSUE ECONOMIES: THE LEGACY OF TITMUSS’S THE GIFT RELATIONSHIP ----------------------------- 38
TITMUSS’S GIFT AND GIFT-EXCHANGE ----------------------------------------------------------------------- 40
CHALLENGING THE ALTRUISTIC-DONOR MODEL ----------------------------------------------------------- 43
LABOUR AND PROPERTY RIGHTS: PATENT AND THE FACILITATION OF KNOWLEDGE PRODUCTION - 46
CONCLUSION ---------------------------------------------------------------------------------------------------- 48
CHAPTER FOUR: TOWARDS A FRAMEWORK FOR ANALYSIS -------------------- 51
THIS THESIS IS NOT A SOCIOLOGICAL STUDY OF ETHICS. -------------------------------------------------- 52
GIVING GIFTS IN REAL TIME ----------------------------------------------------------------------------------- 57
ALTRUISTIC FERVOUR IN SOUTH KOREA -------------------------------------------------------------------- 62
FEMINIST APPROACHES TO REPRODUCTION ----------------------------------------------------------------- 64
SCIENCE IN SOCIETY -------------------------------------------------------------------------------------------- 69
THE SCIENTIFIC UTILISATION OF REPRODUCTIVE TISSUES AS A “PUBLIC GOOD”: INDIVIDUALS,
COLLECTIVES AND THE ‘IDEAL’ DONOR. -------------------------------------------------------------------- 75
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COMPARING APPROACHES TO THE PUBLIC GOOD THROUGH OOCYTES AND BLOOD: PROBLEMS OF
‘TECHNICITY’ ---------------------------------------------------------------------------------------------------- 76
CONSTRUCTING THE IDEAL DONOR: CHECKING PASSION AT THE DOOR ------------------------------- 82
IDEAL DONORS IN THE CONTEXT OF LIVE ORGAN TRANSPLANT ------------------------------------------ 84
CONCLUSION: RESEARCH QUESTIONS ------------------------------------------------------------------------ 88
CHAPTER FIVE: DESIGNING RESEARCH TO EXAMINE THE SCIENTIFIC
UTILISATION OF REPRODUCTIVE TISSUES ---------------------------------------------- 91
INTRODUCTION -------------------------------------------------------------------------------------------------- 91
OUTLINING THE RESEARCH STUDY --------------------------------------------------------------------------- 92
KNOWING EXPERIENCE? --------------------------------------------------------------------------------------- 92
DATA COLLECTION --------------------------------------------------------------------------------------------- 94
ETHICS ------------------------------------------------------------------------------------------------------------ 95
DEFINING COHORTS -------------------------------------------------------------------------------------------- 96
RESEARCH METHODS ----------------------------------------------------------------------------------------- 100
DEMOGRAPHIC INFORMATION ------------------------------------------------------------------------------ 104
DATA ANALYSIS ---------------------------------------------------------------------------------------------- 106
CONCLUSION -------------------------------------------------------------------------------------------------- 110
CHAPTER SIX: REPRODUCTIVE TISSUES, “KIN ETHICS” AND PREFERENCES
IN GIVING OÖCYTES TO SCNT RESEARCH ---------------------------------------------- 111
INTRODUCTION ------------------------------------------------------------------------------------------------ 111
REPRODUCTIVE TISSUES AND THE “ETHICS OF KIN” ----------------------------------------------------- 112
QUANTITATIVE RISK MANAGEMENT AND OÖCYTES ----------------------------------------------------- 114
EGG-SHARING FOR SCNT RESEARCH ---------------------------------------------------------------------- 118
GIVING OÖCYTES TO SCNT RESEARCH AS WASTE MANAGEMENT ------------------------------------- 120
OÖCYTE PROVISION FOR SCNT RESEARCH: EXTRACTION, TIME AND LIFESTYLE ------------------- 122
SELF-EXCLUSION AND HIERARCHIES OF EMOTIONAL EFFORT ------------------------------------------ 124
RECIPROCITY AND OÖCYTE PROVISION FOR SCNT RESEARCH: UNRESOLVED TENSIONS ---------- 127
COMPENSATING ‘HEALTHY’ DONORS ---------------------------------------------------------------------- 131
VIEWS OF STEM CELL RESEARCH --------------------------------------------------------------------------- 132
SKETCHES OF AN AFFECTIVE FRAMEWORK --------------------------------------------------------------- 137
CONCLUSION -------------------------------------------------------------------------------------------------- 142
CHAPTER SEVEN: GIVING REPRODUCTIVE TISSUES WITHIN AFFECTIVE
FRAMEWORKS -------------------------------------------------------------------------------------- 145
INTRODUCTION ------------------------------------------------------------------------------------------------ 145
REPRODUCTIVE OÖCYTE PROVISION: AN OVERVIEW ---------------------------------------------------- 146
‘DISEMBODIED’ MOTHERHOOD ----------------------------------------------------------------------------- 146
SUSPENDING RECIPROCITY IN IDENTIFIED REPRODUCTIVE OÖCYTE PROVISION --------------------- 150
CHOOSING ‘GOOD’ PARENTS -------------------------------------------------------------------------------- 154
THE REWARD OF FAMILY ------------------------------------------------------------------------------------ 160
MOBILISING REPRODUCTIVE OÖCYTE DONORS FOR SCNT RESEARCH -------------------------------- 161
EMBRYO PROVISION: AN OVERVIEW ----------------------------------------------------------------------- 162
EMBRYO PROVISION TO RESEARCH: KEEPING THE FAMILY NUCLEAR --------------------------------- 164
EMBRYOS AND A COMMONS OF (IN)FERTILITY ----------------------------------------------------------- 167
EMBRYOS FOR REPRODUCTIVE PURPOSES: THE ABSTRACT RECIPIENT -------------------------------- 169
CONCLUSION -------------------------------------------------------------------------------------------------- 172
CHAPTER EIGHT: SCIENTIFIC UTILISATIONS OF REPRODUCTIVE TISSUES
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IN AUSTRALIA: RECOGNISING DISCRETIONARY RECIPROCITY AND
PASSIONATE DIMENSIONS --------------------------------------------------------------------- 175
SUMMARY ----------------------------------------------------------------------------------------------------- 175
GIFTS, ANONYMITY AND RECIPROCITY -------------------------------------------------------------------- 180
DISCRETIONARY RECIPROCITY ------------------------------------------------------------------------------ 183
DESTABLISING THE CONNECTION BETWEEN ALTRUISM AND FEMININITY ---------------------------- 185
REPRODUCTIVE TISSUE AND THE POLITICS OF MOTHERHOOD ------------------------------------------ 188
FORMS OF MONEY AND PROBLEMS OF EQUIVALENCY --------------------------------------------------- 192
PAYMENT AND FREEDOM ------------------------------------------------------------------------------------ 197
CHECKING PASSION AT THE DOOR: RATIONALLY FINDING THE ‘PUBLIC GOOD’ --------------------- 203
INTER-PERSONAL ANONYMITY AND GENERALIZED EXCHANGE ---------------------------------------- 206
POSITIVE ORIENTATIONS: THE SELF AND THE WELFARE STATE ---------------------------------------- 209
MARGINAL IDENTITIES AND SCIENTIFIC RESEARCH ----------------------------------------------------- 212
WOMEN AS A GENERAL CATEGORY ------------------------------------------------------------------------ 214
CHAPTER NINE: CONCLUSIONS AND DIRECTIONS FOR FUTURE RESEARCH
------------------------------------------------------------------------------------------------------------ 217
PRINCIPAL FINDINGS ----------------------------------------------------------------------------------------- 218
LIMITATIONS -------------------------------------------------------------------------------------------------- 219
INTERCONNECTIONS BETWEEN FINDINGS AND THEORY ------------------------------------------------- 221
IMPLICATIONS ------------------------------------------------------------------------------------------------- 223
TOWARDS FUTURE RESEARCH ------------------------------------------------------------------------------ 225
REFERENCES ---------------------------------------------------------------------------------------- 227
APPENDICES ----------------------------------------------------------------------------------------- 245

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Glossary

Allogeneic transplant: the implantation of organs and tissues into the patient that are
obtained from another person.
Anonymous tissue provision: this occurs when, at the time the tissue is provided, the donor
and recipient(s) are unknown to each other. They may however, understand that their tissues
are being provided to others in a specific geographical location.
Autologous transplant: the use of organs or tissue that are the patient’s own.
Blastocyst: A blastocyst is the name given to a fertilised oöcyte which develop in vitro for
five to six days and divide into 70 to 100 cells.
Cleavage embryos: fertilised oöcytes which have divided into 6-8 cells.
Cloned embryo: the cell created through SCNT using a fertile oöcyte and adult cell.
Embryo: the cell resulting from the fusion of oöcyte and sperm.
Gamete: reproductive cells such as oöcytes and sperm.
Identified tissue provision: this occurs when, at the time the tissue is provided, the donor
and recipient(s) are known to each other.
Induced pluripotent stem cells (IPS cells): adult cells which have been programmed to
revert back to stem cells before reprogramming the stem cells to develop into a differentiated
trajectory.
Multipotent cells: cells which have the potential to differentiate into some types of cells.
Oöcyte: female reproductive cell, sometimes referred to as ova (plural) or egg.
Pluripotent stem cells: cells which have the potential to differentiate into every type of cells.
Reproductive oöcyte provision: this involves the transfer of oöcytes from one woman to
another in order to have a child/ren. This may be called therapeutic if infertility is considered
a medical issue. This may occur within contexts of anonymous or identified provision.
Scientific oöcyte provision: for the purpose of the discussion contained in this thesis, this
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