The removal of donor anonymity in the UK

335 Pages·2017·14.24 MB·English

by  Christine Middleton

THE REMOVAL OF DONOR ANONYMITY IN
THE UK: THE SILENCING OF CLAIMS BY
WOULD-BE PARENTS
like TURKMENDAG BRUNSNES, MA.
UniVCt2ity of Nc:.tingh2m
H :~H'·.J2rcJ, Library
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Thesis submitted to the University of Nottingham for
the degree of Doctor of Philosophy
January 2009
Abstract
From 1 April 2005, UK law was changed to allow children born through gamete donation to
access identifying details of the donor. The decision to abolish donor anonymity was strongly
influenced by a discourse that asserted the 'child's right-to-know' their genetic origins. Under
the current regulation, if would-be parents want to receive treatment in the UK, they have no
option but to use gametes/embryos from identifiable donors. For a majority, this also means
that they will be on lengthy waiting lists due to the donor shortage. Interestingly, the voice of
would-be parents - those who would be most affected by a contraction in donor supply and
would carry the burden of informing children of their origins, should they so choose- were not
heard during the donor anonymity debate or thereafter.
Adopting a social constructionist approach, this thesis studies removal of donor anonymity as a
social problem and examines why would-be parents remained silent during the public debate.
There are two major steps taken: first, examining the donor anonymity debate in the public
realm through media presentations, and secondly investigating would-be parents' reactions
through ethnographic studies: a virtual ethnography study and interviews.
The accounts of a sub-group of would-be parents reveal that having a donor-conceived child
constitutes a permanent charge of deviance against the family. Many would-be parents were
reluctant to raise their voices during the donor anonymity debate because they did not want to
be exposed to publicity. Their reluctance to mobilise around pressing claims against the
removal of donor anonymity reflects the variety of ways in which they can avoid the impact of
this legislation.
The thesis concludes by underlining the importance of having an informed public debate about
the disclosure policy, and of developing mechanisms to protect both would-be parents' and
donor offspring's interests.
Journal article published during thesis period:
TURKMENDAG, I., DINGWALL, R. and MURPHY, T., 2008. The Removal of Donor
Anonymity in the United Kingdom: The Silencing of Claims by Would-be Parents.
International Journal of Law, Policy and the Family, 22(3), 283-310 .
. .
11
Acknowledgements
My thanks go first of all to my supervisors, Professor Robert Dingwall and Professor
Therese Murphy, for their continual support, strategic guidance, and for all their help
in converting my ideas into the thesis.
Thanks also to the Institute for the Science and Society (ISS) and to the School of Law
for providing a stimulating academic home for this work. ISS and the International
Office provided funding for my tuition costs. Without the scholarship I could never
have conducted a doctoral work in the UK. My thanks go to Gill Farmer, Patricia
Hulme, Alice Phillips and my colleagues at ISS for making me feel at home.
Thanks to my family and friends for having faith in me. I am grateful to my mother,
Hulya Bahtiyar Turkmendag for her encouragement and endless support. My special
thanks also go to Thomas Brunsnes who helped me on both the academic and the
domestic front. This thesis benefited from numerous conversations with him. Thanks
to Richard Elliot for helping me with the bibliography. Thanks are also due to my
friends Cecily Palmer and Emilie Cloatre who helped in at least a hundred ways. And
finally to Emil Brunsnes for his patience, who arrived in April 2007 to put it all into
perspective.
Finally I would like to acknowledge all those who gave up their precious time to be
interviewed and to share their experiences with me.
This thesis is dedicated to Hulya Bahtiyar Turkmendag.
111
TABLE OF CONTENTS
Chapter One: Introduction ............................................................................................. 1
The research question ..................................................................................... 2
Background ..................................................................................................... 2
The process of project design ......................................................................... 7
Structure of the thesis ................................................................................... 11
Limitations of the study 15
Chapter Two: Social Constructionist Studies of Social Problems ............. 16
The functional approach to social problems ................................................ 17
Challenges to functionalism ........................................................................... 19
Value conflict theory ....................................................................................... 21
The rise of social constructionism ................................................................. 25
Theoretical controversy: challenges to constructionist theory ..................... 28
Contextual constructionism .......................................................................... 30
'Silenced' Claims-Making ............................................................................ 32
Natural history models ................................................................................... 35
Conclusion ....................................................................................................... 38
Chapter Three: Natural history of Donor Anonymity Debate ................... 40
Claims-making activities in Stage 1: constructing the problem ................. 42
The Children's Society's call ........................................................................ 43
A study on donor conceived adults ............................................................... 45
Rose and Another v. Secretary of State for Health ([2002] EWHC 1593 (Admin))
...................................................................................................................... 47
Culmination of Stage 1 ................................................................................. 52
Claims-making activities in Stage 2: recognition of the problem ............... 53
The Donor Information Consultation, a MORl poll and the HFEA's survey53
Removal of donor anonymity ....................................................................... 59
Debates in parliament ................................................................................... 61
IV
._------_.. _... .._ -_ ..- ._ _ ...._ . ....... _----------
Claims-making activities in Stage 3: re-emergence of claims and controversy 63
Claims against the new law from the child's right - to - know camp ........... 64
Claims against the law from opponents of the open donation system .......... 69
Silent resistance of would-be parents ........................................................... 77
Claims-making in Stage 4 .............................................................................. 80
How did children's rights come to monopolise rights claims? ................... 81
The adoption analogy ................................................................................... 81
Violation of moral standards ........................................................................ 86
Conclusion ....................................................................................................... 88
Chapter Four: Research Design and Process ............................................... 92
Rationale of the study undertaken ................................................................ 94
The research questions ................................................................................... 96
Why perform another study on donor conception families? ...................... 97
Why interviews? ......................................................................................... 100
Why virtual ethnography? .......................................................................... 101
Sampling, access and recruitment ............................................................... 104
Recruiting participants for the interviews ................................................... 105
Access negotiations to the online support groups: Locating an informant. 106
Problems with recruitment and snowballing .............................................. 109
What kind of interviews? ............................................................................. 113
Ethical issues .................................................................................... ·········· 117
Data saturation .................................................................................... ········ 121
Description of the virtual ethnography study ............................................ 122
Virtual community ...................................................................................... 123
Virtual ethnography .................................................................................... 126
Ethical issues .............................................................................................. 128
Online pseudonyms and copyright ............................................................. 133
Sampling ..................................................................................................... 134
Representativeness ...................................................................................... 135
\'
_-
... -._. . _._----------------- ................ _.. _.. ................. _.. . _.. .......
Data Analysis ................................................................................................. 136
Posts on discussion boards .......................................................................... 137
The Interviews ............................................................................................ 139
Some reflections ............................................................................................ 140
Chapter Five: Virtual Ethnography on Repromed ................................... 142
Repromed as a research setting ................................................................... 148
Demographic information and the user identities ....................................... 150
Emoticons and avatars ................................................................................ 154
The setting up of the 'donor gamete' forum on Repromed ....................... 155
Themes from the postings ............................................................................ 157
The donor shortage ..................................................................................... 158
Matching donors ......................................................................................... 163
Egg sharing: being a donor. ........................................................................ 167
Donating eggs ............................................................................................. 170
Disclosure ................................................................................................... 174
Fertility travel ............................................................................................. 185
Closure of the forum ..................................................................................... 190
Conclusion ..................................................................................................... 192
Chapter Six: Stigma and Deviance ............................................................. 198
'Failing' to reproduce ................................................................................... 201
Infertility, deviance and stigma .................................................................. 202
Defeating the charges of deviance: infertility and choice .......................... 204
A choice to reproduce: using donor gametes/embryos to conceive .......... 210
The importance of a genetic link ................................................................ 213
Defeating the charges of deviance: "it is absolutely like a biological baby"217
Conclusion ..................................................................................................... 221
Chapter Seven: 'Passing' as 'Normals': Information Management. ....... 225
'Passing': disclosing infertility and infertility treatment .......................... 226
Disclosing having a donor-conceived baby to others: having a 'sort of a
monster' ......................................................................................................... 234
Disclosing to the child ................................................................................... 240
Parents' right to pass information on child's behalf. .................................. 242
Having the genetic parent in the picture ..................................................... 245
Accidental disclosure .................................................................................. 253
The truth may hurt the child ....................................................................... 255
The disclosure policy and discrimination ................................................... 256
Conclusion ..................................................................................................... 260
Chapter Eight: Fertility Travel as an Avoidance Strategy ....................... 265
Fertility Travel .............................................................................................. 267
Anonymity of Donors ................................................................................. 267
Waiting Lists ............................................................................................... 272
Donors with a physical resemblance to the would-be parents .................... 274
Payment to egg donors ................................................................................ 275
High standards of clinics abroad ................................................................. 278
Fertility travel and 'tourism' ....................................................................... 281
Reactions to the disclosure policy ................................................................ 285
Conclusion ..................................................................................................... 288
Chapter Nine: Conclusion ............................................................................ 290
Social problems around donor anonymity ................................................. 291
The child's right to know as a social problem ............................................ 293
The donor anonymity problem as defined by would-be parents .............. 295
Stigma and deviance ................................................................................... 296
Information control and disclosure ............................................................. 298
Fertt·1 ·t ty trave I ................................. ............................................................ 30."..
Policy directions ............................................................................................ 304
..
VII
-- ------------
......
CHAPTER ONE: INTRODUCTION
On 1 April 2005, with the implementation of the Human Fertilisation and
Embryology Authority (Disclosure of Donor Information) Regulations 2004,
UK law was changed to allow children born through gamete donation to access
identifying details of the donor. Once they reach the age of 18, children born
from ova or semen donated after that date will have the right to obtain
identifying information about the donors. Previously, they only had access to
non-identifying information, including the opportunity to ascertain whether
they might be biologically related to a prospective marriage partner.
The removal of anonymity has generally had a negative impact on both the
demand for, and the recruitment of, gamete donors (Cook and Golombok,
1995a; Paul, Harbottle and Stewart, 2006; Robinson et al., 1991; Schover,
Rothmann and Collins, 1992). It has been argued that the UK's policy of non
anonymous and non-remunerated donation not only causes long waiting lists
for donor conception (Dreaper, 2006; British Fertility Society, 2006), but also
drives an increasing number of would-be parents abroad to seek treatment
(Infertility Network UK, 2008). British would-be parents cite the shortage of
gametes (particularly the shortage of eggs) in the UK as a major reason for
receiving treatment abroad (British Fertility Society, 2006; Infertility Network
UK, 2008). A further effect of the change in legislation has been that the cost
of donor insemination (DI) has risen enormously in many centres; and the
programme has effectively been removed from the NHS as standard practice in
most areas (British Fertility Society, 2007). In other words, fewer people now
have access to the treatment in the UK.
A sub-group of would-be parents have been using online discussion forums to
express their reactions to the law however their voices were not heard during
the public donor anonymity debate or thereafter. This thesis focuses on their
absent voices and attempts to understand why would-be parents remained silent
during the donor anonymity debate, whilst advocates of the child's right-to-
know managed to get their claims recognised by the parliament and regulatory
bodies.
The research question
Adopting a social constructionist approach, this study focuses on would-be
parents' reactions to the law. The thesis is guided by an over-arching question:
how may donor conception families' reactions to the disclosure policy in the
UK better be understood? There are two major steps taken to answer this
question: first, examining the donor anonymity debate in the public eye
through media presentations, and secondly investigating a sub-group of would-
be parents' reactions and concerns through ethnographic studies.
Background
Prior to the 1980s, there was little awareness of donor conception in the UK
(Snowden and Mitchell, 1983). Semen donation was perfonned without central
record-keeping or regulation (Frith, 200 I). Children born by this means were
technically illegitimate: the donor rather than the mother's husband was
.1...
considered the legal father (O'Donovan, 1989). In practice, though, the
husband was usually recorded on the birth certificate as the legal father (Frith,
2001). This deception, potentially a criminal offence, contributed to the desire
to keep the child's history secret. In the absence of social and legal
acceptability (Vercollone, Moss and Moss, 1997), concealing the method of
conception from the offspring protected the adults involved - prospective
parents, donors (Daniels and Taylor, 1993), and medical practitioners (Haimes,
1993).
The legal vacuum around assisted conception was challenged by the birth of
Louise Brown, the world's first 'test-tube baby', in 1978. Although this
resulted from in vitro fertilisation (lVF) rather than gamete donation, the
technology clearly opened the way to new combinations of biological and
social parentage that would need legal specification and recognition. In 1982,
the UK government commissioned the Committee of Inquiry into Human
Fertilisation and Embryology, chaired by Baroness Warnock, a prominent
philosopher, to report on the ethical and legal issues associated with assisted
conception and related technologies. The Committee reported in the following
year. Among its conclusions was a proposal that children born from donation
should be defined as legitimate and that the donor should have no parental
rights or duties (O'Donovan, 1988). This recommendation was enacted in the
Family Law Reform Act 1987. The Committee also proposed that, in the case
of gamete donation, the birth certificate should state 'by donation' entered by
the father's or mother's name, as appropriate (Frith, 2001). The latter
recommendation did not survive the House of Commons debate that led to the
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