Donor-conceived Adults Research Articles

Intra-familial dynamics of knowledge and ignorance experienced by donor-conceived adults in Germany

This study explores how donor-conceived adults experience pre- and post-disclosure intra-familial dynamics of knowledge and ignorance in relation to their means of conception. Data were collected through an online survey of 59 individuals aged 21–46 years, who were recruited through the German support and advocacy group Verein Spenderkinder (the Association of Donor-conceived Children). Participants were born into families with heterosexual parents and learned about their conception via anonymous sperm donation between 5 and 46 years of age. Thematic qualitative text analysis revealed four main themes regarding the challenges donor-conceived adults face in reconciling their sense of identity and their relationships within the family: non-absoluteness of pre-disclosure ignorance, new fields of ignorance emerging post-disclosure, ways of dealing with the newly acquired knowledge, and conflicting ownership claims on knowledge and ignorance. These challenges pertain not only to knowledge and ignorance of the participants’ means of conception but also to the way in which (non-)knowing is perceived and managed by family members. Utilizing Peter Wehling’s taxonomy of ignorance as a theoretical framework, the study argues that intra-familial conflicts and challenges experienced by the participants can be attributed to either shifts in or stakeholders’ colliding claims to control the epistemic, social, and temporal dimensions of (non-)knowing in relation to the participants being donor-conceived.

Perspectives on sperm donor anonymity: insights from donor-conceived adults in Belgium.

Are donor-conceived adults in Belgium interested in obtaining donor information, and do these interests vary based on their family backgrounds? Donor-conceived adults express a significant interest in obtaining donor-related information, with the highest interest reported by offspring from heterosexual couples compared to those from lesbian couple-parented or single-parent families. In Belgium, sperm donation is mainly anonymous, but the rise of direct-to-consumer genetic testing challenges this anonymity. This was a cross-sectional study involving an online nationwide survey conducted from July 2022 to October 2023. Participants, aged 18years and older and being aware of their anonymous sperm donor-conceived status, were recruited through various channels. A total of 203 participants were included: 62.6% grew up in heterosexual families with infertile fathers, 26.1% with lesbian couples, 8.4% with single parents, and 3.0% in various or diverse family structures. The survey was available in both French and Dutch and consisted of 43 questions, including a mix of yes/no questions and multiple-choice items. The average age of disclosure was 16.5 years, with notably later disclosure in heterosexual couple-parented households. A substantial 82.8% of donor-conceived individuals expressed a keen interest in obtaining non-personally identifiable donor information, while 69% were curious about personally identifiable donor data. Furthermore, 61.6% conveyed a desire for personal contact with their donors, and 26.6% advocated for the inclusion of the donor's name on their birth certificates. Participants raised in lesbian two-parent families exhibited the lowest level of interest in donor-related information compared with those raised in other family structures. An overwhelming 90.1% wondered about the possibility of having half-siblings from the same sperm donor. Analysis of survey responses on DNA database registration revealed that 55.2% of donor-conceived offspring were already registered, with 68.8% discovering the same donor offspring and 30.4% successfully locating their donors. Compared to individuals from other family structures, those raised in heterosexual couple-parented households exhibit a less positive attitude toward their conception through anonymous sperm donation. About 61.6% of donor-conceived individuals reported experiencing distinct emotions compared to their peers, while 44.1% encountered psychological difficulties related to anonymous sperm donation, primarily attributed to late disclosure. The majority supported the idea of informing the donor about the number of children he facilitated to conceive. Lastly, the study highlighted that 21.2% of donor-conceived adults considered becoming donors themselves, and 31.3% expressed willingness to use an anonymous donor whenever faced with fertility challenges. Our sample size may not fully represent all adults conceived through anonymous sperm donation in Belgium. Participation bias may have influenced the results, especially due to the overrepresentation of participants from heterosexual couples. Additionally, an association exists between individuals raised by heterosexual couples and late disclosure, complicating the analysis by introducing a confounding factor. The findings of this study contribute to a better understanding of the needs and preferences of donor-conceived adults, with significant potential impact on patient education and healthcare policy. Study funding was not obtained for this research. There are no conflicts of interest to disclose. N/A.

O-224 “There might be two hundreds of us” - a qualitative study on the experience of meeting large numbers of same donor offspring

Abstract Study question What are the experiences of donor-conceived people who discover large numbers (over 20) of same donor offspring, from a personal and relational point of view? Summary answer Participants reported feeling shocked by the number of donor-siblings. It led them to redefine their identity and their relations with their donor-siblings and the donor. What is known already The experience of discovering and meeting donor-siblings has been recently well documented. Yet, very little is known about how the size of the donor sibling group impacts this experience. A few studies have addressed the need to limit the number of offspring per donor. There is no consensus on what this limit should be and the regulations in that regard vary across countries. Although fears of incestuous relationships are still prevalent, policy discussions tend to focus mainly on the negative psychosocial impacts of discovering a large donor sibling group, however, no empirical evidence has allowed to support this concern. Study design, size, duration We conducted an exploratory study using a qualitative research design. Data collection was conducted in the Fall 2021 and Winter 2022 using a purposive sampling method. No geographical limitations were set for the data collection. Participants/materials, setting, methods The inclusion criteria for the recruitment of participants were: 1) donor-conceived adults aged 18 or over; 2) French or English-speaking; 3) with 20 or more donor-siblings. Data collection was carried out through online in-depth interviews. In total, 22 people took part in the study (16 women, 7 men and 1 non-binary person). They were aged between 21 and 76. Eight came from the US, 7 from the UK, 5 from Canada, and 2 from Germany. Main results and the role of chance The discovery of a large donor-sibling group provoked feelings of shock and surprise, combined with curiosity. Indeed, many participants mentioned that they had been disconcerted by this discovery, which often coincided with the disclosure of their mode of conception. Although the connections formed with their donor-siblings were generally described as enriching, their number was seen as an infringement of their singularity and individuality. The idea of having been “mass conceived” generated a certain unease, sometimes even a feeling of repulsion. Furthermore, the size of the group was often perceived either as a hindrance to the formation of meaningful bonds with donor-siblings, or as a burden. While some regretted not being able to know all their donor-siblings and mourned those impossible ties, others felt overwhelmed by the sheer number of exchanges, obligations, and unpredictable events their number entailed. Finally, a large donor-sibling group was seen by some as a potential obstacle to their relationship with the donor. For some, the fact that the donor donated his sperm on such a large scale questioned his integrity and motivations and depicted him in an unfavourable light. For others, being so numerous competing for his attention minimised their chances of establishing contact with him. Limitations, reasons for caution Despite the innovative nature of the study, the size of the sample and the variability of the experiences do not allow for definitive conclusions to be drawn and limit the understanding that can be gained from it. Further research should examine for example the context of online sperm donation. Wider implications of the findings With the democratization of direct-to-consumer DNA testing, more and more contacts between donor-siblings will occur. It is therefore important to examine how this phenomenon unfolds more specifically in the context of large donor-sibling groups. This will inform policy discussions on the need to limit the number of offspring per donor. Trial registration number Not applicable

Make our wellbeing a priority: donor-conceived adults call for ongoing support and conversation about their donor conception

The experiences of donor-conceived adults have received relatively little research attention despite the increasing trend of gamete conception. In this qualitative study, ten donor-conceived adults: eight women and two men, were interviewed to explore their experience of being donor-conceived. The participants did not automatically have the right to access identifying information of their donors upon turning eighteen as they were born prior to the introduction of the 2004 Human Assisted Reproductive Technology (HART) Act in New Zealand. The overarching theme identified was a need for parents, donors, and the fertility industry to prioritise their longer-term wellbeing. To this effect, participants wanted recognition of the importance of their donor conception history for their identity, and called for early disclosure to be reinforced through open, ongoing conversations with their parents. They highlighted the need for support to process the implications of donor conception, and to search for and link with their donors. Study findings underscore the value of legislation and practices which enable disclosure in the context of ongoing openness and provide access to support for donor-conceived individuals.

Circumstances Leading To Finding Out about Being Donor-Conceived and Its Perceived Impact on Family Relationships: A Survey of Adults Conceived via Anonymous Donor Insemination in Germany

Recent empirical research on the psychosocial implications of donor insemination is increasingly based on data directly obtained from donor-conceived persons. This descriptive study on donor-conceived adults in Germany inquires into their experience of finding out about being donor-conceived and answers the following research question: how do German adults conceived via anonymous donor insemination find out about the means of their conception and how do they experience family relationships post finding out? An online self-administered questionnaire targeting German donor-conceived adults to obtain qualitative and quantitative data was administered between September and November 2020. Fifty-nine donor-conceived adults were recruited via the support and advocacy group Verein Spenderkinder. Participants had been born in heterosexual-couple-parented families, were between 21 and 46 years old, and found out about the circumstances of their conception between 5 and 46 years of age. A broad spectrum of contexts and circumstances in which participants learned about being donor-conceived were reported, such as discovery via medical records, through disclosure as a result of parental consideration of the child’s current life situation or through direct-to-consumer DNA testing. Finding out about the means of their conception was experienced by participants as affecting their relationships with their family members to different degrees and in various ways. This first systematic inquiry into German donor-conceived adults’ experiences expands the literature and provides basic data for further research. Direct-to-consumer DNA testing is identified as one emerging trigger for finding out, warranting future research. The heuristic value of further in-depth inquiry into donor-conceived adults’ relationship with family members other than their parents, in particular their siblings, is highlighted.

Development of the Tool to Empower Parental Telling and Talking (TELL Tool): A digital decision aid intervention about children's origins from donated gametes or embryos.

This study aimed to create and develop a well-designed, theoretically driven, evidence-based, digital, decision Tool to Empower Parental Telling and Talking (TELL Tool) prototype. This developmental study used an inclusive, systematic, and iterative process to formulate a prototype TELL Tool: the first digital decision aid for parents who have children 1 to 16 years of age and used donated gametes or embryos to establish their families. Recommendations from the International Patient Decision Aids Standards Collaboration and from experts in decision aid development, digital health interventions, design thinking, and instructional design guided the process. The extensive developmental process incorporated researchers, clinicians, parents, children, and other stakeholders, including donor-conceived adults. We determined the scope and target audience of the decision aid and formed a steering group. During design work, we used the decision-making process model as the guiding framework for selecting content. Parents' views and decisional needs were incorporated into the prototype through empirical research and review, appraisal, and synthesis of the literature. Clinicians' perspectives and insights were also incorporated. We used the experiential learning theory to guide the delivery of the content through a digital distribution plan. Following creation of initial content, including storyboards and scripts, an early prototype was redrafted and redesigned based on feedback from the steering group. A final TELL Tool prototype was then developed for alpha testing. Detailing our early developmental processes provides transparency that can benefit the donor-conceived community as well as clinicians and researchers, especially those designing digital decision aids. Future research to evaluate the efficacy of the TELL Tool is planned.

O-214 New Study of 529 Donor-Conceived Adults

Abstract Study question Does how and when a donor-conceived person (DCP) learns about their conception significantly affect their experiences and choices, including whether they’d consider using a donor or donating their own gametes? Summary answer DCP are more likely to have neutral/positive feelings if told at a very young age about their donor origins by a family member. What is known already DCP have reported that knowing about the methodology of their conception from an early age is optimal. Study design, size, duration A cross-sectional survey of adult DCP was disseminated to registered users of the Donor Sibling Registry (DSR) in 2021. The survey consisted of 31 items including whether experience as DCP was positive or negative, the willingness to use donor gametes if spontaneous conception was not an option, and included questions regarding donating gametes. Participants/materials, setting, methods 529 people (81.7% female) completed the survey. The median age was 28 years (range 18-77 years) and 94.7% were conceived via donor sperm. Main results and the role of chance Most felt “neutral” (31.6%), “positive” (26.3%) or “very positive” (20.8%) about being a DCP regardless of donor type (sperm vs. oocyte vs. embryo). While most found out about being a DCP after age 18 (63.4%), those with a positive experience were more likely to “have always known” (40.7%). Those with a positive experience were not more likely to consider the donor a relative (46.4%) or have an ongoing relationship with one or more half-siblings from the same donor (24.5%). A negative experience being a DCP was associated with having medical complications due to a lack of a complete health history (30.0%). Willingness to utilize donor gametes if unable to conceive spontaneously was low (31.9%) and few had considered or used donor gametes in the past (12.1%). However, DCP who rated their overall experience as neutral/positive were significantly more likely to be willing to consider using donors themselves if needed (39.8%). Only 1.9% (10) DCP had donated sperm, oocytes, or embryos. DCPs who were donors tended to be less likely to have an ongoing relationship with their own donor (50%) but were no more likely to have an ongoing relationship with a half-sibling(s) from the same donor (85.7%) Limitations, reasons for caution Because it is not known how many donor-conceived people exist, we don't know what percentage of them have responded to this survey. Wider implications of the findings People conceived by donor-assisted reproduction are more likely to have neutral to positive overall feelings surrounding their conception if they are told at a very young age about their donor-conceived origins by a family member. Early disclosure should therefore be an integral part of any prospective parent counseling. Trial registration number Not applicable

Secret Shame—Male Infertility and Donor Conception in the Wake of Retrospective Legislative Change

Historically, sperm donation was shrouded in secrecy to protect the normative family and the perceived vulnerability of infertile men. However, openness about donor conception is increasingly encouraged, in acknowledging that donor-conceived people may benefit from having access to information about their biogenetic origins. Since 2017 in the state of Victoria, Australia, donor-conceived people have been able to access previously anonymous donor records. Drawing on interviews with 17 donor-conceived adults who have come to know their donor through the new laws, this article explores the impact of finding out about the donor on relationships with mothers and fathers, and points to the persistent effects of stigma and shame about donor conception within families. Most of the donor-conceived participants were told about their donor conception in early adulthood. The age range for time of disclosure was mid-teens to early 40s. Most reported that their fathers did not want them to know. In some cases, mothers had disclosed, but sworn them to secrecy. Sensitivity to fathers’ feelings fostered a desire among participants to maintain secrecy about his infertility, especially in relation to wider family and friendship networks. Our findings revealed that secrecy about men’s infertility is heavily reliant on women’s emotional labor to protect ageing infertile fathers’ sense of manhood. Coupled with fathers’ overt resistance to openness, intergenerational secret keeping is perpetuated in families. Laws supporting openness potentially exacerbate the historical stigma associated with male factor infertility in a culture that continues to conflate virility, fertility, and masculinity.

The motivations of donor-conceived adults for seeking information about, and contact with, sperm donors

Research questionHow do the demographic characteristics, mental health experiences and disclosure experiences of donor-conceived adults shape motivations for seeking information about their sperm donors, contact with them, or both? DesignSixty-nine Australian adults who conceived through sperm donors completed an online survey. Uniquely, information and contact seeking were investigated as two distinct concepts. ResultsParticipants reported a variety of demographic, mental health, disclosure and discovery experiences. Most had been motivated to seek information about their donor (88%), contact with them (71%), or both. The most commonly reported motivations for each act were for medical information, expanding their identity and curiosity. Logistic regression findings were significant for wanting medical information as a motivation for seeking donor information (P = 0.03). Endorsement of this motivation was associated with self-reported anxiety (P = 0.02) and less likely as participant age increased (P = 0.02). Motivation to contact donors for medical information was associated with self-reported anxiety (P = 0.02) and depression (P = 0.01), and more likely when the participant was raised in a household that included the recipient co-parent (P = 0.04). As years since disclosure or discovery increased, participants were less likely to report wanting medical information as a motivation (P = 0.02). ConclusionOverall, participants were motivated to obtain information and seek contact with sperm donors. Motivations for each were similar despite participants varying in age and reporting a range of circumstances regarding disclosure, some of which were adverse.

Finding people like me: contact among young adults who share an open-identity sperm donor.

STUDY QUESTIONWhat interests and experiences do donor-conceived adults have with respect to same-donor peers/siblings, when they share an open-identity sperm donor?SUMMARY ANSWERDonor-conceived young adults report considerable interest in, and primarily positive experiences with, their same-donor peers, with some finding ‘people like me’.WHAT IS KNOWN ALREADYThrough mutual-consent contact registries, director-to-consumer DNA testing and other means, donor-conceived people with anonymous (i.e. closed-identity) sperm donors are gaining identity-related information from, and establishing relationships with, people who share their donor.STUDY DESIGN, SIZE, DURATIONSemi-structured, in depth telephone and Skype interviews with 47 donor-conceived young adults were carried out over a 31-month period. Inclusion criteria were being one of the first adults for each donor to obtain their identity and being at least 1-year post donor-information release.PARTICIPANTS/MATERIALS, SETTING, METHODSParticipants (aged 19–29 years, 68.1% women) were born to female same-sex couple parents (46.8%), a single mother (29.8%) or heterosexual couple parents (23.4%); all parents had conceived through the same US open-identity sperm donation program. The dataset was analyzed thematically and included interviews from only one participant per family. Each participant had a different donor.MAIN RESULTS AND THE ROLE OF CHANCEInterest in, and experiences with, same-donor peers suggested that they occupy a unique position in the lives of donor-conceived young adults who share their open-identity donor. Contact can provide identity-relevant information and support through the availability of relationships (whether actualized or potential), shared experiences, and easier relationships than with their donor. Most donor-conceived young adults felt positively about their contact experiences. Of those not yet linked, almost all expressed an interest to do so. Some had met the children raised by their donor. When asked, all expressed an interest in doing so.LIMITATIONS, REASONS FOR CAUTIONInterviews were conducted with donor-conceived young adults who were uncommon in their generation in terms of: having an open-identity sperm donor; the majority knowing about their family’s origins from childhood; and having parents that accessed at the time one of the only open-identity sperm donation programs. Further research is needed to assess applicability to all donor-conceived adults; findings may be more relevant to the growing number of people who have an open-identity donor and learned in childhood about their family’s origins.WIDER IMPLICATIONS OF THE FINDINGSParticipants were among the first generation of donor-conceived adults with an open-identity sperm donor. Their experiences and perspectives can provide essential guidance to programs and others with similar origins. Early disclosure of family origins and identifying the donor did not diminish the young adults’ interest in their same-donor peers. Positive experiences suggest that the benefits of contact include not only identity-relevant information (through shared traits and experiences), but also relationships with and support from people who understand the uncommon experience of being donor conceived. Implications include the need to educate families and intended parents about the potential benefits of knowing others who are donor conceived, and the risk of unexpected linking across families by donors, regardless of donor-conceived person or family interest.STUDY FUNDING/COMPETING INTEREST(S)The study was funded by the Lesbian Health Fund of GLMA: Health Professionals Advancing LGBTQ Equality. The authors have no conflict of interest to declare.

From Stranger to Family or Something in Between: Donor Linking in an Era of Retrospective Access to Anonymous Sperm Donor Records in Victoria, Australia

Abstract In June 2015, the state of Victoria, Australia retrospectively opened its sperm and egg donors’ records, becoming only the second jurisdiction in the world to do so and the first where substantial pre-legislative records are available and stored in a central register. The new legislation gave donor-conceived adults and donors who were conceived or donated under conditions of anonymity (ie prior to 1988) the right to apply to the state’s Central Register for each other’s identifying information, which is released to them if the subject of the application consents. Between the introduction of the law and its further amendment in March 2017, more than 100 applications were made. Through a thematic analysis of donor-conceived adults’ and donors’ Statements of Reasons – a written document applicants were required to complete when they applied – the article explores applicants’ motivations for applying, the information they sought, and their goals with regard to contact. The study found that most applicants were driven by curiosity and a desire for personal information about the other party. They also expressed a strong desire to meet and have an ongoing relationship with the subject of their application. The study also revealed an unanticipated desire on the part of previously anonymous donors for information about their offspring, suggesting future research could explore the emotional needs of donors in greater depth.

Secrets and disclosure in donor conception

This article considers the disclosure, sharing and exchange of information on being donor conceived within families, drawing on data from a study undertaken with donor-conceived adults registered with UK Donor Link (a voluntary DNA-linking register). This paper considers the narratives of how respondents found out they were donor-conceived and what events triggered disclosure of this information. This paper then goes on to examine the role secrecy played in their family life and uses the concept of 'display' to explore how secrecy affected their relationships with their immediate and extended family. Secrets are notoriously 'leaky' and we found complex patterns of knowing and uncertainty about whom in the family knew that the person was donor-conceived. We argue that what is kept secret and from whom provides insights into the multifaceted web of social relationships that can be created by donor-conception, and how knowledge can be managed and controlled in attempts to display and maintain family narratives of biogenetic connection.

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

This paper considers the experiences of adults conceived following sperm donation, who were registered with a voluntary DNA linking register and considers: how awareness of being donor-conceived affected their identity and family relationships; 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 relatively neglected research area. This study is the first, to our knowledge, to consider the experiences of donor-conceived adults using a DNA-based register. This paper presents qualitative data from a questionnaire-based study with 65 adults conceived following sperm donation. It examines how ideas of relatedness, kinship and identity are enacted and how narrative certainties are challenged by opening up new conceptions of what it means to be ‘related’. No single story of being donor-conceived emerged – with competing narratives about the effects and implications for respondents’ kinship relationships and sense of identity. The knowledge of being donor-conceived could be both a powerful disrupter and a consolidator of existing family relationships. This study sheds light on how identity and kinship relationships are negotiated and managed by donor-conceived adults, both with their existing family and donor ‘relations’, and how these can change over the life-course.

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.

The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business.

Thousands of people worldwide have been conceived using donor gametes, but not all parents tell their children of their origin. Several countries now allow donor-conceived offspring to potentially know their genetic parent if they are informed of their donor-conceived status. At the same time, personal genetic testing is a rapidly expanding field. Over 3 million people have already used direct-to-consumer genetic testing to find information about their ancestry, and many are participating in international genetic genealogy databases that will match them with relatives. The increased prevalence of these technologies poses numerous challenges to the current practice of gamete donation. (i) Whether they are donating in a country that practices anonymous donation or not, donors should be informed that their anonymity is not guaranteed, as they may be traced if their DNA, or that of a relative, is added to a database. (ii) Donor-conceived adults who have not been informed of their status may find out that they are donor-conceived. (iii) Parents using donor conception need to be fully informed that their children's DNA will identify that they are not the biological parents and they should be encouraged to disclose the use of donor gametes to their children. Together, these concerns make urgent a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring and protect the rights of donors. Specifically, there is a need to ensure that new genetic information is communicated in a way that promotes both the safety and the privacy rights of offspring and donors alike. All parties concerned must be aware that, in 2016, donor anonymity does not exist.

A qualitative study exploring counselling for release of information to participants of a donor-assisted conception programme

Worldwide, donor-assisted conceptions are increasing with legislative reforms in some countries providing opportunities for participants of a donor-assisted conception programme, i.e. recipients, donors, donor-conceived adults and their genetically related siblings and half-siblings, to access information. Whilst policy and practice for accessing donor-identifying information vary, there has been no research exploring the perceptions and experiences of those who provide the service. This study aimed to explore the perceptions and experiences of Australian and New Zealand infertility counsellors who provide counselling for release of information to participants of a donor-assisted conception programme. Using a qualitative research design, in-depth interview data of six infertility counsellors were thematically analysed to identify key themes. We report the primary themes that emerged from the data which include professional perspectives on the role of counsellor in the counselling process, the professional and societal responsibility to provide counselling, and influences on professional practice. Findings from this qualitative study can be used as a platform for larger international studies on the clinical practice of donor information release and to inform clinical practice and service delivery. The implications of these results for policy and future longitudinal research are also discussed.

Identity Disclosure and Information Sharing in Donor Conception Regimes: The Unfulfilled Potential of Voluntary Registers

This article explores the scope and effectiveness of formal donor identity registers currently in operation in assisted conception regimes in Australia and the UK. In particular, it examines the function of voluntary registers which are intended to fill the gaps left by ‘central’ identity registers which mandate timed release of donor identity on request of donor-conceived adults. There are three ‘gaps’ left by central registers identified here: conceptions which took place prior to the operation of the relevant registers; parents and offspring who desire access to identifying information or a means of making contact prior to the age set for information release; and parents and offspring who desire information not available under current registers, specifically, identifying information or a means of making contact with other offspring from the same donor. The article reflects on interviews with a set of 21 parents who had undertaken donor conception in Australia through licensed IVF treatment concerning their understandings of disclosure regimes and wishes for, and experience of, seeking information and contact. Voluntary registers established by government bodies in Australia and the UK have largely failed to deliver benefits, and indeed may offer a misleading promise to users, because they have given rise to such a small proportion of matches. These registers are ‘passive’ in that there is no outreach to parties not on the register to invite them to join when there is a match waiting there. However, voluntary registers could be reframed and resourced on a more facilitative basis to assist users. I propose that formal voluntary registers could be more usefully remade as ‘active’ registers, making contact with possible participants and offering intermediary services and counselling to establish and communicate expectations and to offer mediated contact, including contact without identity disclosure. Active voluntary registers could adapt current structures into a more flexible and responsive system capable of operating both prospectively and retrospectively. I contend that this is a better outcome than the current polarization between an inability to access information for many, on the one hand, and proposals such as retrospective identity disclosure without consent, on the other.

Expectations and experiences of gamete donors and donor-conceived adults searching for genetic relatives using DNA linking through a voluntary register.

What are the experiences of donor-conceived adults and donors who are searching for a genetic link through the use of a DNA-based voluntary register service? Donor-conceived adults and donors held positive beliefs about their search and although some concerns in relation to finding a genetically linked relative were reported, these were not a barrier to searching. Research with donor-conceived people has consistently identified their interest in learning about-and in some cases making contact with-their donor and other genetic relatives. However, donor-conceived individuals or donors rarely have the opportunity to act on these desires. A questionnaire was administered for online completion using Bristol Online Surveys. The survey was live for 3 months and responses were collected anonymously. The survey was completed by 65 donor-conceived adults, 21 sperm donors and 5 oocyte donors who had registered with a DNA-based voluntary contact register in the UK. The questionnaire included socio-demographic questions, questions specifically developed for the purposes of this study and the standardized Aspects of Identity Questionnaire (AIQ). Motivations for searching for genetic relatives were varied, with the most common reasons being curiosity and passing on information. Overall, participants who were already linked and those awaiting a link were positive about being linked and valued access to a DNA-based register. Collective identity (reflecting self-defining feelings of continuity and uniqueness), as assessed by the AIQ, was significantly lower for donor-conceived adults when compared with the donor groups (P < 0.05), but not significantly different between linked/not linked or length of time since disclosure of donor conception (all Ps > 0.05) for donor-conceived adults. Participants were members of a UK DNA-based registry which is unique. It was therefore not possible to determine how representative participants were of those who did not register for the service, those in other countries or of those who do not seek information exchange or contact. This is the first survey exploring the experiences of donor-conceived adults and donors using a DNA-based voluntary register to seek information about and contact with genetic relatives and the first to measure aspects of identity using standardized measures. Findings provide valuable information about patterns of expectations and experiences of searching through DNA linking, identity and of having contact in the context of donor conception that will inform future research, practice and policy development. No funding was obtained for this study. The authors have no competing interests to declare except for M.C. who was national adviser to UKDL from 2003-2013. Not applicable.

Proposed legislative change mandating retrospective release of identifying information: consultation with donors and Government response

STUDY QUESTIONHow do gamete donors who presumed they could remain anonymous respond to proposed legislation to retrospectively remove anonymity?SUMMARY ANSWERA little more than half of the donors opposed the recommendation to introduce legislation to remove donor anonymity with retrospective effect.WHAT IS KNOWN ALREADYAn increasing proportion of parents disclose their origins to their donor-conceived children and growing numbers of donor-conceived adults are aware of how they were conceived. Research indicates that access to information about the donor is important to donor-conceived people. However, worldwide most donor-conceived people are unable to find any identifying information about the donor because of the practice of anonymous gamete donation.STUDY DESIGN, SIZE, DURATIONThis study adopted a qualitative research model using semi-structured interviews with gamete donors that included open questions. Interviews with 42 volunteers were conducted between December 2012 and February 2013.PARTICIPANTS/MATERIALS, SETTING, METHODSBefore 1998 gamete donors in Victoria, Australia, were able to remain anonymous. Pre-1998 donors were invited through an advertising campaign to be interviewed about their views on a recommendation that legislation mandating retrospective release of identifying information be introduced.MAIN RESULTS AND THE ROLE OF CHANCEDonors were almost evenly split between those who supported and those who rejected the recommendation to introduce legislation to remove donor anonymity with retrospective effect. About half of the donors who rejected the recommendation suggested the compromise of persuading donors voluntarily to release information (whether identifying or non-identifying) to donor-conceived people. These donors were themselves willing to supply information to their donor offspring. The findings of this study informed the Victorian Government's response to the proposed legislative change. While acknowledging donor-conceived people's right of access to information about their donors, the Government decided that identifying information should be released only with the consent of donors and that donors should be encouraged to allow themselves to be identifiable to their donor offspring.LIMITATIONS, REASONS FOR CAUTIONThere is no way of knowing whether participants were representative of all pre-1998 donors.WIDER IMPLICATIONS OF THE FINDINGSThe balancing of donors' and donor-conceived people's rights requires utmost sensitivity. All over the world, increasing numbers of donor-conceived people are reaching adulthood; of those who are aware of their mode of conception, some are likely to have a strong wish to know the identity of their donors. Legislators and policy-makers in jurisdictions permitting anonymous gamete donations will need to respond when these desires are expressed, and may choose to be guided by the model of consultation described in this paper.STUDY FUNDING/COMPETING INTERESTSThe study was funded by the Victorian Department of Health. The authors have no conflicts of interest to declare.TRIAL REGISTRATION NUMBERNot applicable.

Working with previously anonymous gamete donors and donor-conceived adults: recent practice experiences of running the Dna-based voluntary information exchange and contact register, UK Donorlink

This article describes recent practice experiences with donor conceived adults, donors, non-donor-conceived adult children of donors using the voluntary DNA-based register, UK DonorLink. It highlights additional complexities faced when using DNA rather than paper records for searching, in particular from the risk of false positives, low chances of success and potential inclusion of biological parents’ DNA. Professionals’ experiences in supporting those being “linked” suggest challenges as well as rewards. Registration carries the potential to be therapeutic for donor-conceived adults and donors and to enhance their political awareness regardless of links being made. Registrants value both peer and professional support, providing the latter can respond flexibly and be delivered by staff experienced in intermediary work. Given that the majority of those affected by donor conception internationally come from anonymous donation systems, these findings are highly pertinent and argue the need for political and moral debate about such service provision.