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 .{ ----....'~h_ 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 \' ................ _.