Donor Conception Research Articles

On the sensations of direct-to-consumer DNA testing: realisations, resemblance and relationships

The field of genealogy has rapidly evolved with the rise of direct-to-consumer DNA testing, a digital technology with the potential to disrupt previously held understandings of family history. Recent theorisation in the sociology of personal life provides a useful lens to attune to potent sensations and affinities sparked by direct-to-consumer DNA testing. Our analysis focuses on the accounts of three donor-conceived people – Thomas, Simone and Amira – whose DNA discoveries significantly disrupted their familial, cultural and national identities. We explore three cascading flashes of insight derived from our analysis: realising and reordering the family tree – how DNA discoveries were experienced through a range of initial sensations from shock to stupidity to feeling cheated and duped; reflecting on resemblance – how DNA discoveries were felt through sensations of similarity and alterity; and re-evaluating relationships – how the sensations of DNA discoveries (re)shaped interactions with family. This article contributes to understanding donor-conceived people’s relational practices following DNA discoveries and the role of sensations in these practices. We argue that such sensations impact understandings of self and familial relationships, raising questions about social and genetic inheritance and who counts as family.

Risk Factors for Prematurity and Congenital Malformations in Assisted Reproductive Technology Pregnancies-A Retrospective Study.

Background: Assisted reproductive technology (ART) nowadays plays a major role in the treatment of infertility, with the most frequently used techniques being in vitro fertilization (IVF) and intracytoplasmic sperm injection (ICSI). The objective of this study is to analyze pregnancies achieved using these ART techniques and their correlations with the prematurity and congenital malformations rates. Methods: This is an observational retrospective longitudinal study that includes 814 newborns conceived through an ART, namely IVF or ICSI. Results: Using a multivariate logistic regression analysis mode, there is a higher prematurity rate in twin pregnancies OR 16 (95% CI 10.7, 23.8), donor conception OR 1.8 (95% CI 1.1, 3.3) and PIH pregnancy OR 2.6 (95% CI 1.5, 4.5). The odds of malformations in these ART pregnancies are increased by the stage of the embryo (day 3) OR 2.6 (95% CI 1.3, 5.2), fresh embryo transfer OR 2 (95% CI 1.2, 3.4) and donor conception OR 2.3 (95% CI 1.2, 4.4). The ART used (IVF/ICSI) does not influence the prematurity or birth defects rate. Conclusions: Donor conception is found to increase the odds of both prematurity and congenital malformations. The ART used (IVF/ICSI) does not influence the prematurity or birth defects rate.

'I have to remind myself that everyone's search is different': experiences and outcomes of searching and not searching for donor connections among donor conceived adults.

What are the experiences and outcomes of donor conceived adults who are actively searching for, open to contact with, or not searching for donor connections? Most participants were actively searching or open to contact, and 67% had found or been found by a connection; finding or not finding experiences were complex. There is variation among donor conceived individuals in their interest in donor connections. Individual reasons for searching for connections, and which donor connections are searched for, also vary. Most research studies have focussed on individuals who are actively searching for their donor or donor siblings. Global increases in direct-to-consumer DNA testing and social media participation mean that connections may be made to individuals unaware of their (or their relatives') involvement with donor conception. These social and technological changes have also increased the chances of donor conceived individuals being contacted without expecting or desiring contact. This study included 88 donor conceived adults, in the UK, who participated in an online multi-method survey between January and August 2022. The survey was designed in consultation with staff and volunteers from the UK's largest community networks for donor conception families (Donor Conception Network, DCN) and donor conceived people (Donor Conceived Register Registrants' Panel, DCRRP). It was piloted by five donor conceived people before its launch. Participants were recruited with assistance from DCN and DCRRP, via social media, university mailing lists, and snowballing. Participants were mostly female (n = 65, 74%) and sperm donor conceived (n = 79, 90%). Of the 88 participants, 39 (44%) were actively searching for their donor connections, 44 (50%) were open to contact but not actively searching, and 5 (6%) were not searching. Questions were closed (yes/no, rating scale, or multiple choice) or open-ended, addressing experiences of donor conception, searching for connections, and finding or not finding connections. Data were analysed both quantitatively and qualitatively. Quantitative results showed no differences between the groups on any demographic variables or in when or how they found out about being donor conceived, and no differences between active searchers and those open to contact in whether they had found their donor connections. Significant differences were found between groups in their interest in their genetic history and the perceived importance of genetics to their sense of identity, with active searchers being more interested and rating this as more important than those open to contact. Methods of searching significantly differed across groups, with active searchers using genetic testing and social media more than those open to contact. 59 participants across all groups (active searchers (n = 29, 74%), open to contact (n = 27, 61%), not open to contact (n = 3, 60%)) had found or been found by a donor connection. Experiences of finding or not finding donor connections among participants actively searching or open to contact were captured by the theme complexities, with six subthemes: uncertainties in searching and relating; searching as open-ended; different donor connections, different experiences; expectations and realities; searching and finding or not finding as catalysing change; and experiences of other donor conceived people. Most participants were members of relevant community organizations. As is common in research in this area, the sample was mostly female and conceived using donor sperm. Donor conceived people who are disinterested in donor connections may be unlikely to participate in research on this topic. The nature and impact of the search process itself should be considered when developing appropriate mechanisms of support for all donor conceived people, regardless of whether they are actively searching for connections or not. Further research should seek to better understand how donor conceived people with varying levels of interest in searching for donor connections differ from one another. This study was funded by the UK Economic and Social Research Council [New Investigator Award ES/S015426/1]. The authors have no competing interests to declare. N/A.

Reduced Intensity transplantation vs chemotherapy in CR1. A prospective, pseudorandomized study in 50-70 year old AML patients.

The aim of this prospective, international multicenter, pseudorandomized study comparing RICT HCT to standard-of-care chemotherapy in intermediate- or high-risk AML patients 50-70 years using the donor versus no-donor concept. Part 1 included only patients with potential family donors (RD) at the date of HLA-typing of the first potential sibling or CR-date, if later. Part 2 allowed the inclusion of patients without a possible sibling donor using the start of an unrelated donor (URD) search as inclusion date. 360 patients were registered and 309 analyzed. The median follow-up was 47 months (1-168). There was no difference in overall survival (OS) between the RD (n = 124) and the Control (n = 77) groups (p = 0.50, 3-year OS RD: 0.41(95% CI; 0.32-0.50); Controls: 0.49 (95% CI; 0.37-0.59)). The main cause of death was relapse (67% RD; 88% Controls). In Part 2, the 3-year OS was 0.60 (95% CI 0.50-0.70) for URD-HCT (n = 86) and 0.37 (95% CI 0.13-0.62) for Controls (n = 20), respectively (p = 0.10). When analyzing transplanted patients (Part 2), the OS at 3-years was higher for URD-HCT than RD-HCT (0.67 (0.55-0.76) vs. 0.42 (0.26-0.57; p = 0.005). This study doesn't support elderly HLA-identical siblings as donors for older AML patients undergoing a RICT allogeneic HCT in first CR.

CRISPR/Gal4BD-Cas donor adapting systems based on miniaturized Cas proteins for improved gene editing.

Targeted precise point editing and knock-in can be achieved by homology-directed repair(HDR) based gene editing strategies in mammalian cells. However, the inefficiency of HDR strategies seriously restricts their application in precision medicine and molecular design breeding. In view of the problem that exogenous donor DNA cannot be efficiently recruited autonomously at double-stranded breaks(DSBs) when using HDR strategies for gene editing, the concept of donor adapting system(DAS) was proposed and the CRISPR/Cas9-Gal4BD DAS was developed previously. Due to the large size of SpCas9 protein, its fusion with the Gal4BD adaptor is inconvenient for protein expression, virus vector packaging and in vivo delivery. In this study, two novel CRISPR/Gal4BD-SlugCas9 and CRISPR/Gal4BD-AsCas12a DASs were further developed, using two miniaturized Cas proteins, namely SlugCas9-HF derived from Staphylococcus lugdunensis and AsCas12a derived from Acidaminococcus sp. Firstly, the SSA reporter assay was used to assess the targeting activity of different Cas-Gal4BD fusions, and the results showed that the fusion of Gal4BD with SlugCas9 and AsCas12a N-terminals had minimal distraction on their activities. Secondly, the HDR efficiency reporter assay was conducted for the functional verification of the two DASs and the corresponding donor patterns were optimized simultaneously. The results demonstrated that the fusion of the Gal4BD adaptor binding sequence at the 5'-end of intent dsDNA template (BS-dsDNA) was better for the CRISPR/Gal4BD-AsCas12a DAS, while for the CRISPR/Gal4BD-SlugCas9 DAS, the dsDNA-BS donor pattern was recommended. Finally, CRISPR/Gal4BD-SlugCas9 DAS was used to achieve gene editing efficiency of 24%, 37% and 31% respectively for EMX1, NUDT5 and AAVS1 gene loci in HEK293T cells, which was significantly increased compared with the controls. In conclusion, this study provides a reference for the subsequent optimization of the donor adapting systems, and expands the gene editing technical toolbox for the researches on animal molecular design breeding.

Mapping Ethical, Legal, and Social Implications (ELSI) of gamete donation.

This scoping review investigates the Ethical, Legal, and Social Implications (ELSI) of gamete donation, a critical facet of Assisted Reproductive Technologies, by analyzing the evolving research scope, methodological approaches, and the geographical skew in the literature. Despite the increased global uptake of donor gametes, current scholarship predominantly emanates from Western contexts and focuses on majoritized groups. This bias constrains the universality of research findings and limits their applicability across varied legal, cultural, and social contexts, underscoring a need for broader inclusivity. We addressed 867 pivotal articles published between 1999 and 2019. Our analysis reveals a discernible escalation in research volume, with 62% based on empirical research. The intellectual landscape unfolds into four dominant clusters: Regulatory Frameworks, Incentives, and Access; Family Dynamics and Genetic Linkages; Identity and Privacy in Donor Conception; and Cultural and Societal Attitudes towards GD. Each cluster highlights nuanced dimensions of gamete donation, from regulatory intricacies and psychological welfare to identity ethics and cultural perceptions. Our findings advocate for a shift towards more globally representative and methodologically inclusive research. By integrating diverse cultural narratives and expanding geographical breadth, future research can offer holistic understandings of gamete donation, fostering equitable and culturally resonant practices and policies worldwide.

The Donor Conception Identity Questionnaire: associations with mental health and searching for and finding donor connections

ObjectiveTo understand how the Donor Conception Identity Questionnaire (DCIQ) correlates with mental health and explore differences on the DCIQ between donor conceived people who were actively searching for donor connections to those who were not and those who had found their donor connections to those who had not. DesignCross sectional survey. Subjects88 donor conceived adults ranging in age from 18 to 70 (Mean = 34.27 years, median = 31 years). 39 participants were actively searching for their donor connections, and 49 were not. ExposureDonor conception identity was measured using a questionnaire and scores were correlated with existing measures of mental health. Main outcome measuresParticipants completed the DCIQ and measures of wellbeing, satisfaction with life, identity, pride and stigma. ResultsFactor analysis of items from the DCIQ identified four domains: 1. Concern and preoccupation, 2. Internalised stigma, 3. Pride and acceptance, and 4. Openness and understanding. The identified factors correlated with scales of psychological and social wellbeing. Active searchers scored higher than non-active searchers on ‘Concern and preoccupation’ F(1, 79) = 7.543, p = .007 and ‘internalised stigma’ (F(1, 79) = 4.355, p = .040). Donor conceived individuals who had found their donor connections scored lower on ‘internalised stigma’ F(1, 79) = 7.071, p =.009 and higher on ‘openness and understanding’ (F(1, 79) = 6.083, p = 0.016) compared to those who had not found their donor connections. ConclusionThe findings of the present study show that cores on the DCIQ correlate with existing measures of psychological and social wellbeing. Furthermore, donor conceived individuals searching for their donor connections differ from those not actively searching on key domains of the DCIQ. Implications for future avenues of study, and for support for donor conceived people are discussed.

Donor conception, direct-to-consumer genetic testing, choices, and procedural justice: an argument for reform of the Human Fertilisation and Embryology Act 1990.

In this article, using theories of procedural justice and 'slow violence', we consider potential reform of the Human Fertilisation and Embryology Act 1990. Our theoretical discussion is underpinned by findings from the ConnecteDNA project, exploring how people affected by donor conception experience direct-to-consumer genetic testing (DTCGT). The negative impacts of DTCGT, especially shock discoveries about the circumstances of someone's conception in adulthood, are linked to donor anonymity, and how its continued protection is experienced as a barrier to the rights and agency of donor-conceived people. We focus on two key issues relating to the donor information access process set out in section 31ZA of the 1990 Act. The first is that it excludes certain cohorts of donor-conceived people, creating inequalities of access to donor information. The second is the impact of the use of DTCGT to search for that information. We discuss what a procedurally just process of law reform would look like, concluding that, whatever (prospective) approach to donor anonymity is taken, the donor information access process should be the same for all donor-conceived people. We thus argue that, even were the status quo to be maintained, reform of the donor information access process with retrospective effect would be required.

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.

Most donor-conceived people have good psychological health.

Linked article: This is a mini commentary on Talbot et al., pp. 1747–1759 in this issue. To view this article visit https://doi.org/10.1111/1471‐0528.17892.

Low-dose aspirin prophylaxis to prevent hypertensive disorders of pregnancy after in vitro fertilisation: a scoping review protocol

IntroductionPregnancies resulting from in vitro fertilisation are associated with an increased risk of developing hypertensive disorders of pregnancy, such as preeclampsia, when compared with naturally conceived pregnancies.ObjectiveThe efficacy of aspirin...

P-495 Are open-identity oocyte and sperm donors ready for the release of their identity to offspring conceived with their gametes? Follow-up 14-17 years post-donation

Abstract Study question What attitudes and needs do open-identity oocyte and sperm donors have regarding potential future contact with adult offspring from their donation? Summary answer Most oocyte and sperm donors had positive attitudes towards being contacted by offspring and wanted some guidance, but one in ten was negative towards contact. What is known already The number of donor-conceived persons (DCPs) requesting identifying information about their donor is expected to rise as large groups conceived with gametes from open-identity donors are reaching adulthood. Men and women donating within open-identity programs must accept that their identity may be released to offspring from their donation, but they have no obligation to engage in any contact. In Sweden, donors can contact the clinic to obtain information about the number of offspring from their donation, but no There is limited knowledge about open-identity donors’ attitudes about potential contact with DCPs and their need for guidance about handling such contacts. Study design, size, duration The present study is part of the prospective longitudinal Swedish Study on Gamete Donation and concerns the fifth wave of data collection conducted in 2021-2022, which included 215 donors (87% response). Following exclusion of known/directed donors (n = 22) and those who stated knowing that their donation had not resulted in a child (n = 24) the present study sample included 100 oocyte donors and 91 sperm donors. Participants/materials, setting, methods The Swedish Study on Gamete Donation used consecutive recruitment of new donors at all fertility clinics providing gamete donation during a three-year period (2005-2008). Participants were requested to complete postal surveys at five time points. The present study concerns data collected 14-17 years post-donation and includes study-specific items on donors’ attitudes and needs regarding potential future contact with DCPs. Data analysis with Pearson’s chi-square statistic and multinominal logistic regression. Main results and the role of chance At 14-17 years post-donation, most of the 100 oocyte and 91 sperm donors were living with a partner (65%) and had children of their own (77%). Among participants, about half had obtained information from the clinic that their donation had resulted in child(ren) and remaining donors had no information about the results of their donation. Most donors had positive attitudes towards being approached by offspring from their donation (71%) while remaining were neutral (19%) or negative (10%). Donors who were ignorant about any donor offspring were three times more likely to be negative towards contact compared to being positive (OR 3.26; CI 1.05-10.11), when controlling for sociodemographic variables. The majority of donors wanted to receive guidance on how to handle potential future contact with DCPs (59%), and this wish was not significantly related to their gender, educational level or presence of own children. The vast majority of donors wanted to be notified by the clinic when a DCP requests identifying information about them (93%). Furthermore, most donors supported that clinic staff enquires about their stance towards contact with DCPs and would like to convey that they are open to contact (80%). Limitations, reasons for caution The present study concerns a national cohort of women and men who donated oocytes and sperm in the context of the Swedish legislation mandating open-identity donation, which limits the generalizability of our findings to other groups and contexts. Wider implications of the findings A few years before potential release of their identity, most oocyte and sperm donors are positive towards being contacted by offspring from their donation, but many want guidance regarding handling such contacts. Open-identity donors should have access to information and counselling in preparation of potential contact with DCPs. Trial registration number not applicable

P-482 Construct validity of the donor conception identity questionnaire and its association with searching for and finding donor connections

Abstract Study question Is there an association between donor conception identity, psychological and social wellbeing, and searching for and finding donor connections? Summary answer Donor conceived individuals differ on key domains that tap into aspects of their donor conception identity. These relate to searching for and finding donor connections. What is known already There is variation in the ways that donor conceived individuals feel about their conception. Factors such as the age of disclosure are associated with how donor conceived individuals feel about being donor conceived. Associations have been found between donor conception identity and parent-child relationship quality among adolescents, suggesting that curiosity and negativity about donor conception are influenced by the valence of the parent-child relationship. The Donor Conception Identity Questionnaire (DCIQ) has not been previously validated. Study design, size, duration 88 donor conceived adults in the UK participated in a cross-sectional study using an online multi-method survey. Data were collected between January and August 2022. The survey was advertised by the Donor Conception Network and Donor Conceived Register Registrants’ Panel via mailing lists and social media and circulated by the research team and others on social media and university mailing lists. The present findings draw from a subsection of the data collected from this survey. Participants/materials, setting, methods Most participants identified as female (n = 65,74%) and were conceived using donor sperm (n = 79,90%). Participants completed the 25-item DCIQ (adapted from studies of donor conception and adoption identity), and the Mental Health Continuum, the Satisfaction with Life Scale, and adapted versions of the community connectedness and pride subscales of the Gender Minority Stress and Resilience Measure and the HIV Stigma Scale. Participants reported on whether they had searched for and/or found donor connections. Main results and the role of chance Factor analysis of items on the DCIQ identified four domains: 1. Concern and centrality, 2. Internalised stigma, 3. Pride and acceptance, and 4. Openness and understanding. ‘Concern and centrality’ correlated positively with community connectedness (r(86)= 283, p=.008), and stigma (r(86)= 280, p= .008), and negatively with pride (r(86) =-.398, p<.001). ‘Internalised stigma’ was positively correlated with stigma (r(86)=.858, p<.001) and negatively correlated with psychological wellbeing (r(85)=-.378, p <.001), satisfaction with life (r(86)= -.263, p=.013) and pride (r(86)=-716, p<.001). ‘Pride and acceptance’ was positively correlated with psychological wellbeing (r(85) = .276, p = .010), satisfaction with life (r(86)=.329, p =.002) and pride (r(86)=.800, p<.001), and negatively correlated with stigma (r(86)=-.396, p <.001). ‘Openness and understanding’ was positively correlated with psychological wellbeing (r(85)=.304, p=.004), satisfaction with life (r(86)=.316, p=.003), and pride (r(86)=.584, p<.001) and negatively correlated with stigma (r(86)=-.614, p<.001). Searchers scored higher than non-searchers on ‘concern and centrality’ F(1, 79) = 7.543, p= .007 and ‘internalised stigma’ (F(1, 79)=4.355, p=.040). Donor conceived individuals who had found donor connections scored lower on ‘internalised stigma’ F(1, 79) = 7.071, p=.009 and higher on ‘openness and understanding’ (F(1, 79)=6.083, p=0.016) compared to those who had not found their donor connections. Limitations, reasons for caution Lack of diversity within the sample with regards to participant gender, age, and donation type means that findings may not apply across donor conceived populations. The sample were self-selected. Causal relationships between variables cannot be established. Wider implications of the findings The DCIQ may be useful to understand variation in donor conceived people’s psychological health and interest in their donor. The value of the measure in a practical context (e.g., in counselling) should now be evaluated. Further work to validate the scale across different contexts and with different populations is recommended. Trial registration number the UK Economic and Social Research Council [New Investigator Award ES/S015426/1

P-487 The experiences and outcomes of donor conceived adults in the UK who are actively searching, open to contact with, and not searching for donor connections

Abstract Study question What are the experiences and outcomes of donor conceived adults who are actively searching, open to contact with, and not searching for donor connections? Summary answer Most participants were actively searching or open to contact, of whom 67% had found or been found by a connection; finding/not finding experiences were complex. What is known already There is variation among donor conceived individuals in their interest in donor connections. Individual reasons for searching for connections, and which donor connections are searched for, also vary. Most research studies have focussed on individuals who are actively searching for their donor or donor siblings. Global increases in direct-to-consumer DNA testing and social media participation mean that connections may be made to individuals unaware of their (or their relatives’) involvement with donor conception. These social and technological changes have also increased the chances of donor conceived individuals being contacted without expecting or desiring contact. Study design, size, duration 88 donor conceived adults in the UK participated in an online multi-method survey between January and August 2022. The survey was designed in consultation with the UK’s largest community networks for donor conception families (Donor Conception Network, DCN) and donor conceived people (Donor Conceived Register Registrants’ Panel, DCRRP). It was piloted by five donor conceived people before launch. Participants were recruited with assistance from DCN and DCRRP, via social media, university mailing lists, and snowballing. Participants/materials, setting, methods Participants were mostly female (n = 65, 74%) and sperm donor conceived (n = 79, 90%). 39 participants (44%) were actively searching for their donor connections, 44 participants (50%) were open to contact but not actively searching, and 5 participants (6%) were not searching. Questions were closed (yes/no, rating scale, or multiple choice) and open-ended, addressing experiences of donor conception, searching for connections, and finding or not finding connections. Data were analysed both quantitatively and qualitatively. Main results and the role of chance Quantitative results showed no differences between groups in how they found out about being donor conceived, and no differences between active searchers and those open to contact in whether they had found their donor connections. 59 participants across all groups (active searchers (n = 29, 74%), open to contact (n = 27, 61%), not open to contact (n = 3, 60%)) had found or been found by a donor connection. Active searchers who had found (Median = 3, IQR = 2) were more likely to feel their expectations had been met compared to active searchers who had not found (Median = 3, IQR = 1). (U = 55.00, p = .003) and those open to contact who had not found (Median = 4, IQR = 2) (U = 110.50, p = .001). Qualitative results showed that participants in all groups mentioned identity and belonging, family relationships, and having found connections as reasons for presently searching/not searching. Experiences of finding/not finding donor connections among participants actively searching or open to contact were captured by the theme complexities, and six subthemes: uncertainties in searching and relating; searching as open-ended; different donor connections, different experiences; expectations and realities; searching as catalysing change; and experiences of other donor conceived people. Limitations, reasons for caution Most participants were members of relevant community organisations. As is common in research in this area, the sample were mostly conceived using donor sperm and identified as female. Donor conceived people who are disinterested in donor connections may be unlikely to participate in research on this topic. Wider implications of the findings Assumptions about individual thoughts and experiences of searching for and connecting with donor connections should not be made based on search activity, nor should this determine access to support services. The nature and impact of the search process itself should be considered when developing appropriate mechanisms of support. Trial registration number Not applicable

P-492 Providing implications counselling to SA anonymous oocyte donors donating to Australian recipients raising Australian DCC in an open- donor-identity context?

Abstract Study question How do counsellors manage mismatched expectations of stakeholders involved in cross-border oocyte donation between Australia and South Africa with different socio-legal frameworks regarding donor anonymity? Summary answer Cross-border oocyte donation can produce mismatched expectations due to different socio-legal frameworks around donor anonymity between two countries. Counsellors should alert stakeholders to these implications What is known already The demand for oocyte donation in Australia exceeds supply, influencing Australian women to undertake cross-border oocyte donation in South Africa. In Australia, oocyte donation is altruistic and open identity with guaranteed identity release. Conversely, South African oocyte donors are compensated and anonymous. The widespread utilisation of direct to consumer (DTC) ancestry DNA testing and internet-based forums to assist in the interpretation of these results has enabled recipients and donor conceived people (DCPs) to learn the identity of previously anonymous gamete donors. To better prepare stakeholders, some regulatory authorities require counsellors to discuss these implications with donors and recipients. Study design, size, duration Semi-structured in-depth interviews (lasting 45-60 mins) were conducted via zoom and in person in 2022 and 2023. The study included 9 South African infertility counsellors, 16 South African oocyte donors and 12 Australian recipients of cross-border oocyte donation in South Africa. Interviews were recorded and transcribed and transcripts were coded using NVivo software. Data were analysed using thematic analysis Participants/materials, setting, methods Infertility counsellors (9) were recruited through networks of SA fertility professionals. Research participant Australian recipients (12) were recruited through a Facebook peer fertility forum for recipients planning or having completed oocyte donation in SA. Research participant SA oocyte donors were recruited through Facebook advertisements and through snowball sampling resulting from recruitment advertisements placed in clinics and oocyte donor agencies Main results and the role of chance South African oocyte donors anticipated that they would remain anonymous. Some indicated that they would be open to contact should the legal framework in South Africa allow it. As Australian recipients were not required to undergo implications counselling with South African counsellors, the South African counsellors were not aware that recipients pursued the identity of their donors. The counsellors did not alert South African oocyte donors that Australian recipients and DCPs may engage in measures to determine their identity, including via DTC DNA testing and online sleuthing through forums. The Australian recipients believed donor conceived children had a right to know the donor’s identity and donor siblings’ identity, with some wanting early contact. Some recipients took steps to determine their donor’s identity and/or to discover whether their donor conceived children had donor siblings. They suggested that their children could pursue DNA testing in the future, if they wanted to know about their genetic origins. Limitations, reasons for caution The study findings are from 9 SA counsellors, 16 SA oocyte donors and 12 Australian recipients who agreed to be interviewed. They may not represent the views of all stakeholders involved in cross-border oocyte donation between Australia and South Africa. Wider implications of the findings Stakeholders involved in cross-border oocyte donation between anonymous donor and open identity settings should receive implications counselling to avoid a mismatch in the consequences of donor-conception. Trial registration number not applicable

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

O-223 Can the theory of planned behavior predict parents’ disclosure of donor conception to their children within 5-9 years?

Abstract Study question Does application of the theory of planned behavior (TPB) help predict heterosexual-couple parents’ disclosure of donor conception (DC) to their children? Summary answer According to TPB, parents with a stronger will to act in accordance with social norms favoring disclosure were more likely to start the disclosure process. What is known already In contrast to same-sex couples and single mothers by choice, heterosexual couples need to make an active decision to disclose, or not disclose, their use of DC to their child. While disclosure at an early age is encouraged by international and national guidelines, many heterosexual-couple parents struggle with this. A previous study has found an association between parental scores of TPB factors and disclosure intention, but so far, no study has applied the TPB to predict parents’ de facto disclosure behavior. Study design, size, duration The present study is based on the fourth (2014-2017) and fifth (2022-2023) waves of data collection in the prospective, longitudinal Swedish Study on Gamete Donation (SSGD). The project collects survey data at five timepoints from acceptance to be donor-recipient, to the children were adolescents. Participating parents had conceived through identity-release oocyte donation (OD; n = 68, response rate 65%) and sperm donation (SD; n = 62, response rate 56%) as part of a heterosexual couple. Participants/materials, setting, methods The SSGD includes all parents seeking gamete donation treatment at Swedish university hospitals between 2005-2008, the present study including parents’ data when the children were 7-8 years (T4), and 13-17 years (T5). Parents completed the TPB Disclosure Questionnaire (TPB-DQ) at T4, and disclosure behavior was assessed at both T4 and T5. Data from the participants who had not yet disclosed at T4 were analyzed using survival analysis with Cox regressions. Main results and the role of chance Forty participants (31%) had not disclosed the DC to their children at T4 and out of these, 13 had still not disclosed at T5. The TPB-DQ consists of four factors affecting intent to disclose; Attitudes, Subjective norms, Perceived behavioral control and Behavioral intent. The use of Cox regression enabled us to estimate how the parents disclosing to their children related to TPB-DQ, as well as the effect of adjusting for possible confounders. We found a significant association between scores on the TPB-DQ factor Subjective norms at T4 and the subsequent disclosure behavior at T5 (HR = 2.019; 95% CI: 1.36 to 3.01). None of the other factors were significantly associated with disclosure behavior. Adjusting for potential confounders did not affect the outcomes. Our results show that parents with a stronger will to act in accordance with social norms favoring disclosure were more likely to start the disclosure process within the next 5-9 years. In particular, the co-parent’s opinion about disclosure was found to be an important motivating factor in disclosure behavior. Limitations, reasons for caution The present study concerns heterosexual-couple parents with children conceived following treatment with gametes from open-identity donors, which limits the generalizability of our findings to other groups and contexts. Other limitations include the risk of systematic attrition due to the longitudinal study design and decreased statistical power due to few participants. Wider implications of the findings Our findings highlight the importance of perceived subjective norms for parents’ disclosure behavior and indicate that the co-parent’s opinion about disclosure is particularly relevant. Counselors should focus on supporting prospective parents to initiate and maintain a healthy and open dialogue about concerns around family building with DC. Trial registration number Not applicable

P-783 Factors associated with donor-conceived adolescents’ intention to request information about their open-identity oocyte or sperm donor

Abstract Study question Is adolescents’ intention to request information about their open-identity donor associated with donor type, family form, or adolescent gender? Summary answer Adolescent girls were less likely than boys to intend requesting information about their open-identity donor, irrespective of donor type (oocyte/sperm) and family form. What is known already Individuals conceived by open-identity gamete donation have the right to obtain identifying information about their donor. However, there is little knowledge about the level of interest in requesting such information as donor conceived (DC) persons approach the age when they can obtain this information, as well as their interest in contact with the donor and persons who share the same donor. The present study aims to investigate factors associated with adolescentś intention to request information about their open-identity donor and their interest in contact with the donor and donor-siblings. Study design, size, duration The study is based on the fifth wave of data collection in the prospective, longitudinal Swedish Study on Gamete Donation, conducted in 2022-2023. Participating parents provided consent to contact their donor conceived children (ages 13-16), who were approached with a postal/web-survey. A total of 98 adolescents participated (77% response rate): adolescents conceived with sperm donation in lesbian-couple (SD-lesb, n = 48) and heterosexual-couple families (SD-het, n = 27), and those conceived with oocyte-donation in heterosexual-couple families (OD-het, n = 23). Participants/materials, setting, methods The study was part of the longitudinal Swedish Study on Gamete Donation, including couples starting gamete donation treatment at university hospitals between 2005-2008. The current fifth wave of data collection is the first to include children self-report. Participating adolescents included 48 girls and 50 boys with a mean age of 14.44 for girls and 14.28 for boys. The survey comprised of socio-demographics, study-specific items and validated instruments. Data was analyzed with multinominal regression analysis. Main results and the role of chance Roughly half (56%) of the adolescents intended to request information about their open-identity donor, while 12% planned not to and 32% were unsure. Multinominal regression analysis showed a significant effect for gender, but not for family/donation type (SD-lesb, SD-het, OD-het). Girls were significantly more likely than boys to state that they did not intend to request donor information (OR = 4.66, 95% CI [1.13, 19.34]). Among those adolescents who planned to request identifying donor information, a subset stated that they intended to contact the donor (30% boys, 15% girls). Concerning interest in contact with persons who share the same donor, participants were evenly divided between an interest (29%) or no interest (27%) and remaining were unsure (44%). No differences were found with regard to groups or gender. Limitations, reasons for caution The relatively small sample size could affect the results of the statistical analysis, making it harder to get significant results and creating large confidence intervals. There is a possible attrition bias with less well-functioning families not participating. The study was conducted within the Swedish context of identity-release gamete donation. Wider implications of the findings Approaching adulthood, about half of donor-conceived individuals plan to request information about their open-identity donor, highlighting that many DC people want this possibility. The gender difference found contrasts with earlier research findings and points to the need to understand the specific motivations of different groups of DC adolescents. Trial registration number not applicable

O-230 The ethics of disclosing reported conditions in donor-conceived offspring to recipients of the same donor

Abstract Study question To what extent should new genetic risk information, identified after donation, be disclosed to recipients? Summary answer Withholding new genetic risk information from donor sperm recipients may sometimes be ethically justified or even preferred. What is known already In some cases, donor-conceived persons are born with (suspected) harmful genetic mutations. These occurrences may flag increased genetic risks for others if the donor is used for multiple recipients. Genetic conditions can also emerge in donors or their families after donation. Current guidelines, such as those established by the European Directorate for the Quality of Medicines & HealthCare, recommend contacting recipients “in the case of a diagnosis that may seriously affect a child’s health”. However, the specific timing of such disclosures and the circumstances under which (or even whether) information may be withheld are unclear. Study design, size, duration This normative analysis draws initial insights from empirical data obtained from a quantitative study into current practices of fertility clinics and extends to a comprehensive review of academic literature and international guidelines. It evaluates current practices and explores the justifications for (not) informing recipients about (possible) genetic risks linked to their donor, guided by bioethical principles. Participants/materials, setting, methods In June 2023, an electronic questionnaire was sent to all fertility clinics in Belgium to obtain information on current practices regarding the management of genetic mutations in donor treatment. The responses from 15 clinics provided empirical insights that served as an impetus for the subsequent normative analysis. This analysis integrated the findings with normative considerations using the ‘wide reflective equilibrium’ method. Main results and the role of chance Our findings revealed considerable diversity in current practices. Some clinics always informed recipients of newly identified genetic risks (possibly) related to their donor, while others based their decision on various factors. The main arguments for disclosing this information are clinical utility (beneficence) and respect for the recipient’s autonomy. Withholding health-related information can be harmful, especially if it impedes diagnosis and treatment. Moreover, when sperm samples are reserved for additional children from the same donor, disclosure facilitates better-informed reproductive decisions. Conversely, non-disclosure is sometimes justified on the same grounds. If the recurrence risk is absent or equivalent to the general population risk level, disclosure could cause undue alarm and overtreatment. These harms may outweigh the marginal benefits of (immediate) disclosure, particularly for unconfirmed, late-onset, non-severe, and untreatable conditions. Respecting autonomy also implies recognizing the right not to know, by allowing recipients to prespecify the type of information they wish to receive (e.g., untreatable conditions). However, other factors can complicate this assessment. When early diagnosis is crucial, confirming the donor’s link to the reported condition or determining the recurrence risk may take too long. Additionally, a thorough risk analysis becomes more intricate if insemination is planned, embryos are created, or during pregnancy. Limitations, reasons for caution This analysis focuses on cases with anonymous donors and excludes situations involving identifiable and known donors. If the recipient and donor know each other, a distinct set of ethical considerations and duties may emerge. Wider implications of the findings The need for a nuanced, context-sensitive ethical framework for the disclosure of (potential) harmful genetic mutations in a donor to recipients of donor sperm is highlighted. Such a framework could inspire policy development and support ethical decision-making in fertility treatments. Trial registration number Not applicable

P-496 Being a solo mother: an exploration of parenting experiences and support needs of women who intentionally choose to become mothers without a partner

Abstract Study question What support sources do solo mothers in the UK use, how supported do they feel and what areas are lacking? Summary answer Most solo mothers feel supported by family, friends and paid childcare and are confident in their parenting despite finding it difficult to ask for help. What is known already An increasingly common family type, often referred to as ‘solo mothers,’ ‘single mothers by choice’ or ‘choice mothers’, is defined by women who intentionally choose to become mothers without the involvement of a partner. Solo mothers are a relatively homogenous group, who are generally well-educated, employed in professional careers, and financially stable, with most becoming mothers in their mid-thirties/forties. Although solo mothers are frequently described as self-determined and motivated individuals with a strong preparedness for parenting that encompasses both economic and social resources, there is a notable absence of research on their specific parenting experiences and support needs. Study design, size, duration A cross-sectional study was conducted using an online survey. The questionnaire was distributed via solo mother-specific Facebook groups and through newsletters, emails and social media of the Donor Conception Network (DCN). A total of 139 participants responded between July 2021 and February 2022. Participants/materials, setting, methods Most participants were aged 36-45 (53%, 74), had one child (73%, 102) under the age of 11 (88%, 140). Almost all solo mothers had used donated sperm from an unknown donor through a clinic or sperm bank (95%, 132) and around a fifth used donated eggs (22%, 31). All quantitative data was treated as non-parametric and were analysed using descriptive statistics and Spearman’s Rho Correlation tests. Open-ended questionnaire responses were analysed using qualitative content analysis. Main results and the role of chance The most commonly used sources of support for solo mothers in the UK were family members (89%, 123) and non-solo mother friends (80%, 110). Paid childcare was used by 71% (98) of participants with solo mothers using it at least a few times per week. Facebook, particularly solo mum-specific groups, and resources from the Donor Conception Network (DCN, a support organisation for families formed using donor conception) were used by nearly three quarters of respondents (70%, 94 and 71%, 98, respectively). The majority of participants felt supported (78%, 108) but around a quarter (23%, 25) mentioned the need for financial support and the difficulties of relying on a single salary and having to pay for costly childcare. Most solo mums felt confident in their parenting (87%, 122) but found it difficult to ask for help from others (56%, 77). Barriers to asking for help included challenges to autonomy and self-identity, inability to recognise the need for support, fear and apprehension with others, and the emotional aspect of asking for support. There were positive correlations between feeling supported and confidence in parenting (ρ = 0.405, p <.001) and feeling supported and ease in asking for help (ρ = 0.458, p <.001). Limitations, reasons for caution The use of solo mother-specific Facebook groups and DCN resources to recruit solo mothers may have introduced some bias in the sampling methods which may have led to our participants not being more broadly representative of UK solo mothers. Wider implications of the findings Whilst solo mothers may typically be highly educated and financially stable, this is not always the case. Some face challenges in accessing and paying for practical and emotional support. Future research should address provision of better support, given the increasing numbers of solo mother families in the UK and elsewhere. Trial registration number not applicable