Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services.

In recent decades, genetic genealogy has become popular as a result of direct-to-consumer (DTC) genetic testing. Some DTC genetic testing companies offer genetic relative-finder (GRF) services that compare the DNA of consenting participants to identify genetic relatives among them and provide each participant a list of their relative matches. We surveyed a convenience sample of GRF service participants to understand the prevalence of discoveries and associated experiences. Almost half (46%) of the 23,196 respondents had participated in GRF services only for non-specific reasons that included interest in building family trees and general curiosity. However, most (82%) also learned the identity of at least one genetic relative. Separately, most respondents (61%) reported learning something new about themselves or their relatives, including potentially disruptive information such as that a person they believed to be their biological parent is in fact not or that they have a sibling they had not known about. Respondents generally reported that discovering this new information had a neutral or positive impact on their lives, and most had low regret regarding their decision to participate in GRF services. Yet some reported making life changes as a result of their discoveries. Compared to respondents making other types of discoveries, those who learned that they were donor conceived reported the highest decisional regret and represented the largest proportion reporting net-negative consequences for themselves. Our findings indicate that discoveries from GRF services may be common and that the consequences for individuals, while generally positive, can be far-reaching and complex.

'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.

STUDY QUESTION: 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? SUMMARY ANSWER: 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. 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: 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/MATERIALS, SETTING, METHODS: 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. MAIN RESULTS AND THE ROLE OF CHANCE: 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. LIMITATIONS, REASONS FOR CAUTION: 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. WIDER IMPLICATIONS OF THE FINDINGS: 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. STUDY FUNDING/COMPETING INTEREST(S): 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. TRIAL REGISTRATION NUMBER: N/A.

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

STUDY QUESTION: Are donor-conceived adults in Belgium interested in obtaining donor information, and do these interests vary based on their family backgrounds? SUMMARY ANSWER: 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. WHAT IS KNOWN ALREADY: In Belgium, sperm donation is mainly anonymous, but the rise of direct-to-consumer genetic testing challenges this anonymity. STUDY DESIGN, SIZE, DURATION: This was a cross-sectional study involving an online nationwide survey conducted from July 2022 to October 2023. Participants, aged 18 years and older and being aware of their anonymous sperm donor-conceived status, were recruited through various channels. PARTICIPANTS/MATERIALS, SETTING, METHODS: 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. MAIN RESULTS AND THE ROLE OF CHANCE: 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. LIMITATIONS, REASONS FOR CAUTION: 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. WIDER IMPLICATIONS OF THE FINDINGS: 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/COMPETING INTEREST(S): Study funding was not obtained for this research. There are no conflicts of interest to disclose. TRIAL REGISTRATION NUMBER: N/A.

Using the theory of planned behavior to predict parents' disclosure of donor conception to their children: a longitudinal study.

STUDY QUESTION: Can the application of the theory of planned behavior (TPB) help predict heterosexual parents' disclosure of donor conception to their children? SUMMARY ANSWER: 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. WHAT IS KNOWN ALREADY: In contrast to single mothers by choice and same-sex couples, heterosexual couples need to make an active decision to disclose their use of donor conception to their child. While disclosure at an early age is encouraged by international 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' disclosure behavior. STUDY DESIGN, SIZE, DURATION: The present study is based on the fourth and fifth waves of data collection (T4 and T5) in a nation-wide longitudinal study. Participating parents had conceived through identity-release oocyte donation (n = 68, response rate 65%) and sperm donation (n = 62, response rate 56%) as part of a heterosexual couple. PARTICIPANTS/MATERIALS, SETTING, METHODS: The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD). Consecutive recruitment of couples starting oocyte or sperm donation treatment was conducted at all seven fertility clinics providing gamete donation in Sweden during a 3-year period (2005-2008). Participants were requested to complete postal surveys at five time points. The present study includes heterosexual-couple parents following oocyte or sperm donation who participated at the two latest time points when their children were 7-8 years old (T4), and 13-17 years old (T5). At T4, participants completed the study-specific TPB Disclosure Questionnaire (TPB-DQ) measuring attitudes and intentions to disclose the donor conception to the child, and disclosure behavior was assessed at both T4 and T5. Data from those 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 had not disclosed the donor conception to their children at T4 and, out of these, 13 had still not disclosed at T5. We found a significant association between scores of the TPB factor Subjective norms at T4 and their subsequent disclosure behavior at T5 (HR = 2.019; 95% CI: 1.36-3.01). None of the other factors were significantly associated with 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 of particular relevance in this regard. Counselors should focus on supporting prospective parents to initiate and maintain a healthy and open dialogue about concerns around building a family with donor conception. STUDY FUNDING/COMPETING INTEREST(S): The study was funded by the Swedish Research Council. The authors have no competing interests to declare. TRIAL REGISTRATION NUMBER: N/A.

The motives and experiences of donor-conceived persons requesting the identity of their sperm donors.

RESEARCH QUESTION: What are the motives and experiences of donor-conceived persons (DCP) who search for and receive information about their identity-release sperm donor? DESIGN: A qualitative interview study with 29 individuals (21 women, seven men, one non-binary) who were consecutively recruited after having requested information about their sperm donor at five Swedish University hospitals. All participants were conceived after donor insemination to heterosexual couples within an identity-release donation programme. Individual semi-structured interviews were conducted face-to-face or via telephone between September 2016 and November 2019, and transcribed audio recordings were analysed using reflexive thematic analysis. RESULTS: The motives and experiences of DCP were described in two themes. The theme 'donor information can fill different needs' describes that varying motives, thoughts and feelings are related to searching for and obtaining donor information. Motives ranged from curiosity and a desire for agency over one's conception to hopes of finding a new father. The theme 'navigating donor information in a relational context' describes the process of obtaining donor information as interpersonal, highlighting that the DCP needs to balance the interests of different stakeholders, and that obtaining donor information can challenge the relationship quality with the father. CONCLUSIONS: Obtaining the donor's identity has the potential to affect the understanding of DCP of themselves, and to influence relationships within their family in unexpected and challenging ways. Therefore, adequate resources should be allocated to support the growing number of families after identity-release donation.

Why it is important that we understand the information that gamete donors provide about themselves to recipients.

A personal description and goodwill message is often the only form of communication a gamete recipient receives from the donor. However, the nature of the information gamete donors leave for recipients is not well understood. This Viewpoint article discusses a recent study published in this journal that makes a significant contribution to our understanding of this area of research and raises important questions for research going forward.

Searching for and making genetic connections: recommendations for practice from donor conceived adults in the UK.

RESEARCH QUESTION: What are the support needs of donor conceived individuals who are searching for or open to matching with genetic connections? DESIGN: A total of 88 donor conceived adults in the UK participated in an online survey open between January and August 2022. Participants were asked about their level of awareness of current resource provision, recommendations for resources to support the process of searching for genetic connections, and recommendations for resources to support with feelings about searching for or being found by genetic connections. RESULTS: Participants were found to have varying levels of awareness of the resources available to them, with 39% describing themselves as aware, 41% as partly aware and 20% as unaware. Their recommendations for practical and emotional resources also varied. The most recommended resources for practical support were DNA testing and changes to UK law. The most recommended resources for emotional support were counselling and peer and other support groups. CONCLUSIONS: The impact of legal and technological changes such as direct-to-consumer DNA testing and the legal transition to identifiable donation may be felt by donor conceived individuals irrespective of their year of birth. The wishes of donor conceived individuals for different support resources should be borne in mind by practitioners, regulatory bodies, and policy makers going forward.

Legal age limits in accessing donor information: experiences of donor-conceived people, parents, sperm donors and counsellors.

RESEARCH QUESTION: What are the lived experiences of donor-conceived people, parents, sperm donors and counsellors related to legal age limits on accessing donor information in the Netherlands? DESIGN: A phenomenological study was carried out that included 20 donor-conceived individuals, 15 parents, 6 sperm donors and 5 counsellors. Data were collected through online qualitative in-depth interviews and focus groups. The data were analysed using Dahlberg's Reflective Lifeworld Approach. RESULTS: The results show how: (i) age limits create challenges related to dependency, autonomy and loyalty to parents; (ii) donor information can be important for identity development, which looks different at different ages; (iii) inaccessible information can lead to unfair loss and may be perceived as negative; (iv) relational stability provides a good foundation for dealing with the (in)accessibility of donor information; (v) procedural barriers and age limits increase the inaccessibility of donor information; and (vi) comprehensive counselling is desired for donor-conceived individuals, parents and donors. CONCLUSIONS: This study shows that legal age limits on accessing donor information can lead to several negative consequences. The age limits focus on one individual, which is not appropriate for questions about ancestry that always pertain to a relational network. Counselling should be tailored to the child's needs, and the child's family should be involved. Furthermore, the donor should receive independent counselling.

Direct-to-consumer DNA testing: the perspectives and experiences of donor conceived young adults in the UK.

RESEARCH QUESTION: What meanings do donor conceived young adults give to direct-to-consumer DNA testing, and how does direct-to-consumer DNA testing relate to their lived experiences? DESIGN: Thirty-three young adults participated in in-depth interviews in November 2020 and September 2021 as part of a study of donor conceived people in the UK that focuses on the period of young adulthood. All participants were aged between 18 and 31 years, had been conceived by sperm donation at a time of legal donor anonymity, and were mainly resident in the UK. Interviews were analysed using reflexive thematic analysis. RESULTS: Nineteen participants (58%) had used at least one direct-to-consumer DNA test, and 14 (46%) had not. Three participants (9%) had learned about their donor conception inadvertently through a direct-to-consumer DNA test. Twelve participants (36%) had matched with their donor, someone conceived using the same donor, or both. Four related themes that capture participants' perspectives and experiences of direct-to-consumer DNA testing were identified: ruptures, disclosures, webs and temporalities. CONCLUSIONS: To the authors' knowledge, this is the first study to evidence both active interest and disinterest in direct-to-consumer DNA testing among individuals who are donor conceived. The meanings ascribed to, and uses of, direct-to-consumer DNA testing vary significantly among donor conceived young adults. Findings relating to the relationship between 'informal' and 'formal' information systems, and the absence of guidance and support for those using direct-to-consumer DNA tests, should be considered carefully by practitioners, regulatory bodies and policymakers going forward.

Recent Australian Legislative Developments in the Regulation of Assisted Reproductive Technology.

This section considers the recent resurgence of regulatory interest in the field of assisted reproductive technology (ART) practices focusing on the new legislative framework in the Australian Capital Territory (ACT). It provides an overview of the Australian regulatory framework in this field and considers how the new legislation in the ACT sits alongside this framework. A detailed overview of the key provisions of the ACT legislation is provided, before considering whether the legislation goes far enough in addressing some of the more controversial issues in the field of ART.

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.

'Once you open that Pandora's box, you cannot close it': a qualitative study on family relationships following insemination fraud.

RESEARCH QUESTION: Insemination fraud occurs when the spermatozoa intended for insemination have been intentionally swapped for another person's without the knowledge of the intended family. In what ways is this experienced by recipient parents and their offspring? DESIGN: This was a qualitative study involving semi-structured interviews with 15 participants (seven parents and eight donor-conceived individuals) affected by insemination fraud involving the same doctor in Canada. RESULTS: This study documents how insemination fraud is experienced by recipient parents and (their) offspring at the personal and relational levels. At the personal level, insemination fraud can induce a sense of agency loss for the recipient parents and a (temporary) sense of identity realignment for the offspring. At the relational level, it can lead to a reshuffling of genetic ties through the new genetic mapping it involves. This reshuffling can, in turn, disrupt kinship ties, leaving a deep imprint that some families struggle to overcome. Experiences differ depending on whether or not the progenitor is known, and when he is known, on whether it is another donor or the doctor himself. CONCLUSIONS: Given the significant challenges that insemination fraud poses to the families who experience it, it is important that this practice be subjected to the medical, legal and social scrutiny it deserves.

'Doing' kinship: heterosexual parents' experiences of non-genetic parenthood through donor conception.

RESEARCH QUESTION: How do Dutch heterosexual parents who achieved parenthood through donor conception navigate non-genetic parenthood and kinship? DESIGN: A qualitative in-depth semi-structured interview study was performed between September 2018 and January 2019 with both partners of 13 Dutch heterosexual couples where the male partner suffered from infertility and who conceived a child with the help of a sperm donor. Interview questions were based on literature and clinical experiences of experts in the field of donor conception. Interviews were transcribed and analysed using thematic analysis. RESULTS: All parents navigated non-genetic parenthood through 'doing' kinship: they negotiated the importance of nature versus nurture with regards to donor conception and non-genetic parenthood. Most parents perceived genetics as irrelevant for experiencing parenthood, bonding with their children and the preferred role of the donor in their future lives. Yet most of them found genetics relevant for generating similarities between the father and the child, and for wanting the same donor for all their children to ensure a full genetic relation among them. Additionally, based on the donor's genetic bond with the child, some men were anxious about the donor's role in the child's future life and the consequences for their position as a non-genetic father. A few women perceived genetics as relevant in terms of possible inherited illnesses from the donor. CONCLUSIONS: Parents experienced several ambiguities regarding the role of genetics in donor conception and navigated 'doing' kinship in various ways. These aspects need to be taken into consideration during the counselling of prospective parents planning to conceive with donor conception.

Nothing if not family? Genetic ties beyond the parent/child dyad.

Internationally, there is considerable inconsistency in the recognition and regulation of children's genetic connections outside the family. In the context of gamete and embryo donation, challenges for regulation seem endless. In this paper, I review some of the paths that have been taken to manage children' being closely genetically related to people outside their families. I do so against the background of recognising the importance of children's interests as moral status holders. I look at recent qualitative research involving donor-conceived people and borrow their own words to make sense of a purported interest to know (of) their close genetic ties. I also review ways in which gamete donation may have facilitated new kinds of kinship, which are at the same time genetic and chosen. In short, in this paper, I explore what meaning there could be in genetic connections that is not about parenthood. Further, I argue that the focus on parenthood in previous work in this area may be detrimental to appreciating some of the goods that can be derived from close genetic connections.

Student views on recognition and payment options for gamete donation in New Zealand.

BACKGROUND: Demand for donor gametes in New Zealand significantly outweighs the number of willing donors. Payment for donation has been suggested as a viable solution to increase the supply and attract more donors in acknowledging the time, effort and inconvenience associated with donation. AIMS: Internationally, university students are a commonly targeted group for paid gamete donation. This study aims to explore the views of university students in New Zealand to gauge their support and concerns relating to a range of options to recognise donors, including payment. METHODS: Two hundred and three tertiary students completed a questionnaire exploring their views on various forms of recognition for donation and concerns relating to payment. RESULTS: Participants indicated the greatest support for reimbursement for expenses directly related to the donation process. Payment constituting explicit financial advantage was regarded least favourably. Participants held concerns that payment would attract people donating for the 'wrong' reasons and lead to donors concealing relevant histories. Further concerns included payment increasing costs for recipients and causing disparities in access to gametes. CONCLUSIONS: The findings of this study suggest that within a New Zealand context a culture of gift-giving and altruism are strongly held principles towards reproductive donation, including among the student population. This highlights the need to consider alternative strategies to commercial models to overcome donor shortages which are in line with the cultural and legislative context of New Zealand.

National survey of donor-conceived individuals who requested information about their sperm donor-experiences from 17 years of identity releases in Sweden.

STUDY QUESTION: What characterizes the group of donor-conceived (DC) individuals who request information about their identity-release sperm donor in Sweden, and what are their experiences of disclosure, information receipt and donor contact? SUMMARY ANSWER: Following three decades of identity-release donation in Sweden, few DC individuals have requested donor information with varying experiences of information receipt and donor contact. WHAT IS KNOWN ALREADY: In 1985, Sweden was the first country worldwide to enact legislation that gave DC individuals the right to obtain identifying information about their donor. Since then, identity-release gamete donation has become available in many countries but there is limited knowledge about the individuals who request donor information. STUDY DESIGN, SIZE, DURATION: A nation-wide cross-sectional survey study was performed at all seven University hospitals that provided donation treatment in Sweden during 1985-2002. During this period only donor insemination to heterosexual couples was permitted. Inclusion criteria were being 18 years of age or older, conceived with donor sperm and having requested information about the donor by December 2020. Recruitment was performed during 2016-2020. PARTICIPANTS/MATERIALS, SETTING, METHODS: A total of 60 individuals had requested information about their donor. Of these, 53 were approached and 40 individuals, representing 34 families, accepted study participation (75% response rate). Participants completed a postal survey with the WHO-10 well-being index and study-specific questions about experiences of disclosure, motivations for requesting donor information, receipt of information, as well as intentions and experiences of donor contact. Independent t-test and chi-square tests were used to compare ratings of participants with early and late disclosure. MAIN RESULTS AND ROLE OF CHANCE: Of ∼900 DC individuals who had reached adult age, a total of 60 (≈7%) had requested information about the donor. Most of the 40 study participants (78%) made their requests within 2 years after reaching 18 years of age, or following disclosure at later ages (up to 32 years). Several participants had adult DC siblings in the family who had not requested any donor information. All except five participants received identifying information about the donor from the clinic. However, some donors had died or lacked contact information. Among those participants who were able to contact their donor, 41% had done so at the time of the study, while a third of the participants were unsure about potential contact. Several had met the donor in person and a few were in regular contact. About half of the participants had been informed about their donor conception in adolescence or adulthood (age 12-32), and there were significant differences between participants based on age at disclosure. Compared to those with early disclosure, participants with late disclosure were significantly more likely to be dissatisfied with the timing of their disclosure (P = 0.021), to react with negative emotions (P < 0.001), and to subsequently contact the donor (P = 0.047). LIMITATIONS, REASONS FOR CAUTION: The limited population available for inclusion resulted in a small sample size, despite a high response rate. In addition, men's lower participation rate must be taken into consideration when interpreting the results. WIDER IMPLICATIONS OF THE FINDINGS: The small number of individuals requesting information about their identity-release sperm donor is surprising. While not all DC individuals appear to be interested in donor information, it is reasonable to assume that some are unaware of their donor conception and thus unable to make informed decisions regarding their genetic origins. During the coming years, young women and men in many countries will become eligible to access identifying information about their donor. In order to meet the needs of these individuals, and to support positive outcomes for all involved parties, it is essential that adequate protocols and resources are developed. STUDY FUNDING/COMPETING INTEREST: Financial support from The Swedish Research Council. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

Pre-eclampsia in pregnancies resulting from oocyte donation, natural conception or IVF: a systematic review and meta-analysis.

STUDY QUESTION: What is the prevalence of pre-eclampsia (PE) in pregnancies after oocyte donation (OD) compared to natural conception (NC) and to IVF with autologous oocytes (AO)? SUMMARY ANSWER: Overall the prevalence of PE after OD was 4-5 times higher than after NC and 2-3 times higher than after IVF with AO. WHAT IS KNOWN ALREADY: The indication for OD is expanding to lesbian women requesting shared lesbian motherhood. Previous reviews have shown that the risk of PE is higher in pregnancies after OD than after NC and after IVF with AO. Classification on the severity of PE is lacking as is the relationship with known risk factors such as maternal age and multiple gestations. Furthermore the actual prevalence of PE in pregnancies resulting from OD is not known. STUDY DESIGN, SIZE, DURATION: A systematic review and meta-analysis was conducted. A literature search was performed using the following databases: PubMed, EMBASE and CINAHL, OpenGrey and Greynet from January 1980 through July 2020. PARTICIPANTS/MATERIALS, SETTING, METHODS: We included retrospective and prospective cohort studies. The study population consisted of pregnancies after OD and NC or IVF and data had to be available about prevalence of PE. We compared the risk of (severe) PE in OD versus NC and IVF pregnancies, subgrouped by plurality and maternal age. We calculated individual and pooled odds ratios (OR) and prevalence estimates with 95% CI using a random effect model, while heterogeneity was assessed by the I2. MAIN RESULTS AND THE ROLE OF CHANCE: In total, 27 studies comprising of 7089 OD pregnancies, 1 139 540 NC pregnancies and 72 742 IVF pregnancies were available for analysis. The risks of PE and severe PE was increased in OD pregnancies compared to NC pregnancies (pooled OR of all subgroups: 5.09, 95% CI: 4.29-6.04; I2 = 19% and OR: 7.42, 95% CI: 4.64-11.88; I2 = 49%, respectively). This suggests that compared to a PE risk of 2.9% with NC, the risk with OD was between 11.5% and 15.4%. Compared to a severe PE risk of 0.5% with NC, the risk with OD was between 2.3% and 5.6%. The pooled adjusted OR for PE was 3.24 (95% 2.74-3.83) for OD versus NC pregnancies. The risks of PE and severe PE were also increased in OD pregnancies compared to IVF pregnancies (pooled OR of all subgroups: 2.97, 95% CI: 2.49-3.53; I2 = 51% and OR: 2.97, 95% CI: 2.15-4.11; I2 = 0%, respectively). This suggests that compared to a PE risk of 5.9% with IVF, the risk with OD was between 13.5% and 18.0%. Compared to a severe PE risk of 3.3% with IVF, the risk with OD was between 6.8% and 12.2%. The pooled adjusted OR for PE was 2.67 (95% 2.28-3.13) for OD versus IVF. The pooled prevalence of PE in singleton pregnancies after OD was 10.7% (95% CI 6.6-15.5) compared to 2.0% (95% CI 1.0-3.1) after NC and 4.1% (95% CI 2.7-5.6) after IVF. The prevalence in multiple pregnancies was 27.8% (95% CI 23.6-32.2) after OD, 7.5% (95% CI 7.2-7.8) after NC and 9.7% (95% CI 6.2-13.9) after IVF. LIMITATIONS, REASONS FOR CAUTION: The precise definition of PE is still a matter of debate. The different criteria could have affected the prevalence estimate. WIDER IMPLICATIONS OF THE FINDINGS: Nearly one in six women will suffer PE after OD. Although it is uncertain whether these risks are consistent for lesbian couples undergoing shared motherhood, we feel that women who can conceive naturally could be advised to reconsider. In women with primary ovarian insufficiency, we feel that factors that may increase risk of PE ever further, such as double embryo transfer, should be avoided whenever possible. STUDY FUNDING/COMPETING INTEREST(S): No funding or competing interests. REGISTRATION NUMBER: CRD42020166899.

Are donor-conceived people willing to use donors themselves? Insights from individuals conceived via donor-assisted reproduction.

STUDY QUESTION: Are donor-conceived people (DCP) willing to utilize donor gametes themselves if unable to conceive spontaneously? SUMMARY ANSWER: The majority of DCP would consider or are undecided about utilizing donor gametes and those who would consider the utilization are more likely to have been told about their donor-conceived origins at a young age by a family member and have overall positive experiences as a DCP. WHAT IS KNOWN ALREADY: DCP view their donor conception as an important part of their self-identity and many desire contact with genetically related individuals. Additionally, many believe that sperm donation should only be practiced if identifying information on the donor is provided. STUDY DESIGN, SIZE, DURATION: This was a cross-sectional study using a Web-based survey that was disseminated from 6 March to 15 August 2021. A total of 528 participants completed the questionnaire. PARTICIPANTS/MATERIALS, SETTING, METHODS: The researcher-created survey was sent to registered users of the Donor Sibling Registry (DSR) who were conceived via donor-assisted reproduction and were 18 years of age or older. The survey was optional and anonymous, and the main outcome measure was the willingness to use donated gametes if unable to spontaneously conceive. MAIN RESULTS AND THE ROLE OF CHANCE: Of the 528 participants who completed the survey, 40.2% (212/528) have or would consider using donor gametes themselves if unable to conceive spontaneously and 24.6% (130/528) were undecided. Those who had used or were undecided about the utilization were significantly younger (26 years vs. 31 years, P < 0.001) and less likely to be married (32.7% vs. 47.3%, P < 0.001) than those who would not consider using donor gametes. They were also less likely to self-identify as female (78.9% vs. 86.6%, P = 0.03) but had no difference in sexual orientation (P = 0.13). Additionally, they were more likely to have known about their donor-conceived origins for more years (18 (0-50) vs. 11 (0-61), P = 0.004), be informed by a family member (75.5% vs. 65.6%, P = 0.001) and have overall positive feelings about being conceived using a donor (93.0% vs. 52.5%, P < 0.001). LIMITATIONS, REASONS FOR CAUTION: A major limitation is that DSR participants may not be representative of all DCP. Additionally, analyzing the DCP who stated that they were undecided about using donor gametes into the 'would consider' group may be overestimating the openness to utilization in this group. WIDER IMPLICATIONS OF THE FINDINGS: The findings from this study give new insight for health care workers to further counsel patients who are considering using third-party reproduction by providing reassurance that the majority of their future children would consider similar means, if needed, to achieve their family-building goals. STUDY FUNDING/COMPETING INTEREST(S): Funding for this study was received from the Department of Obstetrics and Gynecology Division of Reproductive Endocrinology and Infertility, University of Colorado. All authors declare that there are no conflicts of interest to disclose. TRIAL REGISTRATION NUMBER: N/A.

Shifting to a model of donor conception that entails a communication agreement among the parents, donor, and offspring.

BACKGROUND: Some persons conceived with donor gametes react negatively when they found their birth via donor conception. They request access to information about and seek to communicate with the donor. However, some countries mandate donor anonymity. Other countries allow donor-conceived persons to access donor information, but they can only use this access if their parents have disclosed donor conception to them. We investigated a thorny issue of donor conception: whether donor conception should be shifted from an anonymous basis to a non-anonymous basis. METHODS: We review the issues and concerns regarding donor conception. We then consider the impact of direct-to-consumer genetic testing on donor conception, as well as the influence of donor conception on offspring's identity and the potential of different types of donors. To discuss the future policy of donor conception, the policies on the anonymity of gamete donors were investigated using publicly-available documents in 15 countries. RESULTS: The aim of mandating donor anonymity is to protect the privacy of the donor and intended parents. However, the diffusion of direct-to-consumer genetic testing may make it impossible to maintain anonymity. Birth via donor conception shapes the offspring's identity, and the donor may further influence the development of offspring's identity through communications. It remains important to disclose donor conception to donor-conceived offspring and to provide them with donor information. However, that information might be insufficient for some donor-conceived persons. Here are benefits to having open-identity donors and known donors. Such donors can make an agreement with the parents regarding future communication with the offspring, although both sides should respect privacy. Subsequent counseling for all parties involved can result in better tripartite communication agreements. CONCLUSIONS: In sum, ethical and practical issues that complicate donor anonymity are driving a shift to non-anonymous donor conception, in which all parties come to a communication agreement. To pave the way for such a donor conception system, transitional measures can be put into place. For countries that already adopted non-anonymous donor conception, ensuring the communication agreements is important to protect the rights of parents, donor, and offspring.

Understanding parents' intention to disclose the donor conception to their child by application of the theory of planned behaviour.

STUDY QUESTION: Does the theory of planned behaviour (TPB) contribute to understanding parents' intention to share information about genetic origin with their donor-conceived child? SUMMARY ANSWER: Parents' intention to start disclosure was associated with beliefs that disclosure would have desired consequences and a desire to act in accordance to societal norms. WHAT IS KNOWN ALREADY: Despite a growing consensus on donor-conceived offspring's right to information about their genetic origin, disclosure to the child remains a challenge for many parents, particularly heterosexual couples. TPB has successfully been applied to many health-related contexts and may contribute to increase understanding of parents' decision-making about disclosing the genetic origin to their children. STUDY DESIGN, SIZE, DURATION: A cross-sectional survey study of heterosexual couples with children aged 7-8 years following identity-release oocyte donation (OD, n = 83) or sperm donation (SD, n = 113). PARTICIPANTS/MATERIALS, SETTING, METHODS: The study is part of the prospective longitudinal Swedish Study on Gamete Donation. Couples accepted for oocyte or sperm donation treatment at seven fertility clinics were recruited in 2005-2008 and requested to complete four postal surveys in the following 10 years. The present study sample includes heterosexual couples with donor-conceived children aged 7-8 years. Data were collected with the study-specific TPB Disclosure Questionnaire and analysed with path analysis. MAIN RESULTS AND THE ROLE OF CHANCE: More than half of parents following OD or SD had already disclosed the donor conception to their child (OD 61%, SD 58%). Among parents who had not yet started the disclosure process, the belief that disclosure would have desired consequences (P < 0.05) and a desire to act in accordance to social norms favouring disclosure (P < 0.01) were positively associated with their intention to talk with their child about the donor conception during the upcoming year. In contrast, perceived confidence to talk with the child about his/her genetic origin was found to be negatively associated with the intention to start the disclosure process (P < 0.05). Type of treatment (OD/SD) and the existence or absence of a genetic link to the child were not directly associated with parents' disclosure intentions. LIMITATIONS, REASONS FOR CAUTION: The study was performed with heterosexual couples within the context of the Swedish legislation on identity-release donation, which limits the generalizability to other populations. Also, attrition may have introduced selection bias to the study findings. Future studies using the TPB Disclosure Questionnaire (TPB-DQ) with larger samples are needed to validate this measure. WIDER IMPLICATIONS OF THE FINDINGS: Application of the theory of planned behaviour highlighted the importance of attitudes and social norms for parents' intention to share information about the donor conception with their child. The present results add to the complexity of disclosure of donor conception, and may contribute to promote open communication and support family life following donor conception. STUDY FUNDING/COMPETING INTEREST(S): Financial support from the Swedish Research Council. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.