Voluntary DNA-based information exchange and contact services following donor conception: an analysis of service users’ needs

Medical science has enabled the creation of families through the use of donor conception but some lifelong policy and practice implications are only recently being recognized. Research and practice have shown that donor conception can, for some, carry substantial long-term consequences. In this paper we present findings from a questionnaire-based study that sought to shed light on donor-conceived adults’ and gamete donors’ views on service and support needs when searching for genetic relatives with the aid of DNA testing. The findings demonstrate the complexity and sensitivity of providing services in this newly emerging area of need. Such provision requires collaboration between very different disciplines and agencies (scientific and psychosocial), introduces the potential for blurring of lines of accountability and responsibility, and highlights the challenges of identifying appropriate funding streams. In addition, the findings demonstrate the opportunities and limitations afforded by the use of DNA in identifying unknown genetic relatives

Voluntary DNA-based information exchange and contact services following donor conception: an analysis of service users’ needs

Medical science has enabled the creation of families through the use of donor conception but some lifelong policy and practice implications are only recently being recognized. Research and practice have shown that donor conception can, for some, carry substantial long-term consequences. In this paper we present findings from a questionnaire-based study that sought to shed light on donor-conceived adults’ and gamete donors’ views on service and support needs when searching for genetic relatives with the aid of DNA testing. The findings demonstrate the complexity and sensitivity of providing services in this newly emerging area of need. Such provision requires collaboration between very different disciplines and agencies (scientific and psychosocial), introduces the potential for blurring of lines of accountability and responsibility, and highlights the challenges of identifying appropriate funding streams. In addition, the findings demonstrate the opportunities and limitations afforded by the use of DNA in identifying unknown genetic relatives

Searching for ‘relations’ using a DNA linking register by adults conceived following sperm donation

This paper considers how sperm donor-conceived adults registered with a voluntary DNA linking register, UK DonorLink, constructed identity and relatedness by examining two areas: how their identity was affected by becoming aware that they were donor-conceived; and the process of searching for their donor and donor-conceived siblings. The views and experiences of donor-conceived adults has, until recently, been a neglected area. This study is the first to consider the experiences of those searching through a DNA-based register, and contributes to the growing literature on searching. This paper presents qualitative data from a questionnaire-based study with 65 adults conceived following sperm donation. It examines emerging linkages by investigating how ideas of relatedness, kinship and identity were enacted and how narrative certainties were moved and removed by opening up new conceptions of what it means to be ‘related’. Their knowledge of being donor-conceived was both a powerful disrupter and a consolidator of family relationships. No single story of being donor-conceived emerged – with competing narratives about the effects and implications for respondents’ kinship relationships and sense of identity. This study sheds light on how kinship relationships are negotiated and managed in adulthood by those conceived following sperm donation and how this can change over the life-course

Evolving minimum standards in responsible international sperm donor offspring quota

An international working group was established with the aim of making recommendations on the number of offspring for a sperm donor that should be allowable in cases of international use of his sperm. Considerations from genetic, psychosocial, operational and ethical points of view were debated. For these considerations, it was assumed that current developments in genetic testing and Internet possibilities mean that, now, all donors are potentially identifiable by their offspring, so no distinction was made between anonymous and non-anonymous donation. Genetic considerations did not lead to restrictive limits (indicating that up to 200 offspring or more per donor may be acceptable except in isolated social-minority situations). Psychosocial considerations on the other hand led to proposals of rather restrictive limits (10 families per donor or less). Operational and ethical considerations did not lead to more or less concrete limits per donor, but seemed to lie in-between those resulting from the aforementioned ways of viewing the issue. In the end, no unifying agreed figure could be reached; however the consensus was that the number should never exceed 100 families. The conclusions of the group are summarized in three recommendation

Everyday belongings: Exploring Australian donor-conceived adults’ social, linguistic and digital practices across private and public domains

From the turn of the century, social attitudes have shifted away from secrecy and anonymity in donor conception in line with broader recognition that children have a right to accurate information about their identity and family. As such, some donor-conceived people are now growing up in families who disclose and discuss donor conception openly while others are unexpectedly learning of their donor-conceived status later in life. Yet, little empirical research has explored the array of actors, processes and technologies that shape experiences of belonging for donor-conceived people. This thesis reports on exploratory research of Australian donor-conceived adults’ experiences. The project adopted an innovative interdisciplinary approach, combining methods and analytic techniques from sociology, social semiotics and media studies to explore everyday social, linguistic and digital practices. Data comprise Hansard from a public hearing of a Senate Committee Inquiry into donor conception; a national online survey with sperm donor-conceived (n=90) and egg donor-conceived (n=1) respondents over 16 years of age; and semi-structured interviews with sperm donor-conceived adults (N=28). The research is also underpinned by vignettes of personal experience to reflexively foreground my own positionality as a donor-conceived person. Findings reveal the significant role that digital technologies play in donor-conceived people’s everyday lives. Donor-conceived peers used digital platforms to exchange experiential knowledge and negotiate meanings ascribed to their collective identity, to educate (prospective) recipient parents and the general public about their perspectives, to trace family members through direct-to-consumer DNA testing, and to strategise for increased recognition in legislation. In terms of family, participants navigated complex and dynamic familial (non) relationships and the lingering consequences of anonymity. However, donor-conceived people also found strategies to help them reckon with secrecy and silence, actively responding to social conditions and challenging the institutions of medicine and the law. Indeed, donor-conceived people drew on experiential and institutional knowledges to position themselves as an authority on donor conception as people with lived expertise. I argue that belonging, for donor-conceived people, is experienced across three planes: in relation to peers, family and the State. In doing so, this thesis underscores how everyday belonging is relational and processual, and achieved through a range of momentous events, everyday encounters and humorous artefacts