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Donor-Conceived People's Views and Experiences of Their Donor-conceived people’s views and experiences of their genetic origins: A critical analysis of the research evidence Eric Blyth, Marilyn Crawshaw, Lucy Frith and Caroline Jones* This article reports on a systematic review of English language, peer- reviewed publications from 13 empirical studies with donor-conceived children and adults regarding their experiences and perceptions of donor conception. A total of 19 articles that met the inclusion criteria were reviewed. These were identified by means of a bibliographic search of four electronic databases for the period 1990-2011 and supplemented by the authors’ personal knowledge of work in this field. No reports from such studies appeared prior to 2000, and more than half have been published since 2008, demonstrating the relative novelty of research in this field. Much of the reviewed research evidence concerns individuals conceived through sperm donation conducted under a regime promoting both anonymity and non- disclosure. Consequently, there is little research that pertains to individuals conceived through other forms of collaborative reproduction, nor to those conceived under arrangements and regimes in which early parental disclosure is both advocated and practised and the identity of the donor and of other genetic relatives may be accessible to donor-conceived individuals. The studies consistently report that most donor-conceived people have an interest in securing information about their genetic and biographical heritage – more information than most of them have been able to obtain. Although a number of methodological limitations in the research base are identified, the authors conclude that the evidence is sufficiently robust to promote the implementation of policies and practices that promote transparency and openness in collaborative reproduction, thus reflecting the importance of maximising future choices and opportunities for donor-conceived people. INTRODUCTION This article reviews and evaluates published work that focuses on a relatively recent trend in academic research to understand the perceptions and experiences of donor-conceived people who have learned of the nature of their conception. The informal use of a third party for family-building throughout human history is well documented,1 but its use in medicalised procedures for bypassing impaired fertility has a more recent provenance. Sperm donation has been practised since at least the early 1800s,2 while oocyte and embryo donation have been available only since the early 1980s, following * Eric Blyth, BA, MA, PhD, Professor of Social Work, University of Huddersfield, England, and Visiting Professor, National University of Singapore; Marilyn Crawshaw, BSc(Soc), MA, CQSW, PhD, Honorary Fellow, University of York and independent researcher; Lucy Frith, PhD, Senior Lecturer, Institute of Psychology, Health and Society, University of Liverpool; Caroline Jones, LLB, PhD, Senior Lecturer, School of Law, University of Southampton. Correspondence to: Eric Blyth, University of Huddersfield, Queensgate, Huddersfield HD1 3DH, England; email: [email protected]. 1 Genesis 16 and 30; Douthett M and Bennett S, “A Pacific Perspective on Assisted Reproductive Technologies” in Coney S and Else A (eds), Protecting Our Future: The Case for Greater Regulation of Assisted Reproductive Technology (Women’s Health Action Trust, Auckland, 1999). 2 Novaes S, “The Medical Management of Donor Insemination” in Daniels K and Haimes E (eds), Donor Insemination: International Social Science Perspectives (Cambridge University Press, Cambridge, 1998). (2012) 19 JLM 769 769 Please note that this article is being Should you wish to reproduce this article, provided for research purposes and is not either in part or in its entirety, in any medium, to be reproduced in any way. If you refer to please ensure you seek permission from our the article, please ensure you acknowl- permissions officer. © 2012 Thomson Reuters (Professional) Australia Limited edge both the publication and publisher for further information visit www.thomsonreuters.com.au appropriately. The citation for the journal is Please email any queries to or send an email to [email protected] available in the footline of each page. [email protected] Blyth, Crawshaw, Frith and Jones development of the necessary technology.3 For many years, “practice wisdom” espoused by providers of donor conception services was that donors and recipients should remain anonymous to each other and that knowledge of recipients’ use of donor conception was best withheld from others, including any offspring.4 Thus, donor-conceived people were considered to have “no need to know”. Challenges to the prevailing orthodoxy emerged in the 1980s deriving from recipients wanting to know more about the donor, either for their own or their children’s benefit, and from infant adoption where “best practice” increasingly emphasised the importance of adopted people being able to trace their biographical roots.5 For example, in 1982, the Sperm Bank of California began recruiting donors who agreed to the release of their identity to offspring who had reached the age of 18 years.6 In 1984, the Warnock Committee established by the United Kingdom Government to consider the regulation of reproductive technologies recommended that donor-conceived individuals should be told about the nature of their conception and provided with non-identifying information about their donor, although the Committee did not challenge the principle of donor anonymity per se.7 In 1985, the Swedish Government took the hitherto unprecedented step of requiring all sperm donors to agree to the disclosure of their identity to any offspring – a move that has since been adopted by several other jurisdictions in Australia, Europe and New Zealand.8 The operation of gamete donation as a largely anonymous enterprise has impacted upon both the nature of empirical research on its outcomes and the slow pace at which such research has developed. Initial published research concerned the physical characteristics of children conceived following sperm donation, such as birth weight, birth defects, chromosomal abnormalities and prevalence of multiple and pre-term births,9 and parent-child relationships and children’s psychosocial develop- ment.10 In the main, data were generated from completion of standardised questionnaires by parents (mostly mothers) and teachers, and psychological testing of the children. These studies invariably focused on pre-adolescent children who did not know they were conceived through anonymous donation. Consequently, discussion of children’s accounts of their experiences of donor conception was noticeably absent.11 As increasing numbers of parents began to inform their children (see below for further discussion), children’s experiences and views regarding donor conception started to feature but, largely, only through their parents’ accounts, and were generally confined to anonymous sperm 3 Trounson A, Leeton J, Besanko M, Wood C and Conti A, “Pregnancy Established in an Infertile Patient After Transfer of a Donated Embryo Fertilised in Vitro” (1983) 286 BMJ 835. 4 Royal College of Obstetricians and Gynaecologists, Donor Insemination (leaflet, 1987); Brewaeys A, “Donor Insemination, the Impact on Family and Child Development” (1996) 17 J Psychosom Obstet Gynecol 1. 5 Triseliotis J Feast J and Kyle F, The Adoption Triangle Revisited – A Study of Adoption, Search and Reunion Experiences (BAAF, London, 2005). 6 Sperm Bank of California: personal communication (29 November 2011). 7 Department of Health and Social Security, Report of the Committee of Inquiry into Human Fertilisation and Embryology (Cm 9314, HMSO, London, 1984) (the Warnock Report). 8 Blyth E and Frith L, “Donor-conceived People’s Access to Genetic and Biographical History: An Analysis of Provisions in Different Jurisdictions Permitting Disclosure of Donor Identity” (2009) 23 I J Law Policy Fam 192. 9 Lansac J and Royere D, “Follow-up Studies of Children Born after Frozen Sperm Donation” (2001) 7 Hum Reprod Update 33. 10 Brewaeys, n 4; Brewaeys A, “Parent-Child Relationships and Child Development in Donor Insemination Families” (2001) 7 Hum Reprod Update 38. 11 Golombok S, Brewaeys A, Cook R, Giavazzi MT, Guerra D, Mantovani A, van Hall E, Crosignani PG and Dexeus S, “The European Study of Assisted Reproduction Families: Family Functioning and Child Development” (1996) 11 Hum Reprod 2324; Golombok S, Cook R, Bish A and Murray C, “Families Created by the New Reproductive Technologies: Quality of Parenting and Social and Emotional Development of the Children” (1995) 66 Child Development 285; Golombok S, Brewaeys A, Giavazzi M, Guerra D, McCallum F and Rust J, “The European Study of Assisted Reproduction Families: The Transition to Adolescence” (2002) 17 Hum Reprod 830; Golombok S, MacCallum F and Goodman E, “The ‘Test-Tube’ Generation: Parent-Child Relationships and the Psychological Well-being of IVF Children at Adolescence” (2001) 72 Child Development 599; Golombok S, MacCallum F, Goodman E and Rutter M, “Families with Children Conceived by Donor Insemination: A Follow-up at Age Twelve” (2002) 73 Child Development 952. 770 (2012) 19 JLM 769 Please note that this article is being Should you wish to reproduce this article, provided for research purposes and is not either in part or in its entirety, in any medium, to be reproduced in any way. If you refer to please ensure you seek permission from our the article, please ensure you acknowl- permissions officer.
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