Identity-release Donors Research Articles

O-179 From secrecy to transparency: The journey of donor identity in reproductive medicine in Portugal

Abstract Thanks to significant medical advancements in reproductive medicine, people have more opportunities to achieve their parenthood goals. Third-party reproduction allows individuals and couples who might not otherwise be able to conceive to have the chance to build their family, thanks to the availability of donor gametes and gestational surrogacy. Gamete donation policy in Europe varies by country, raising ethical and legal concerns. In recent years, shifts from anonymity towards openness in donor legislation have occurred in several countries. Globally, in the last decade, there has been an increase in the number of families created using egg, sperm or embryo donation. The number of IVF/ICSI cycles using donor eggs or sperm in Portugal totalled 1890 in 2019 and 54 in 2020 (an unusual year due to the Covid-19 pandemic). In Portugal, the first medically assisted reproduction (MAR) law was approved in 2006, and gamete donations were anonymous. Ten years later, in 2016, Portugal’s MAR legal framework changed, and access to MAR was broadened to all women, independent of their marital status and sexual orientation. Therefore, treatment with donor sperm, oocytes, and embryos became available to recipients, including heterosexual couples, lesbian couples, and single women. In 2018, there was another change in the law and gamete donations became non-anonymous. In Portugal, identity-release donation allows the donor to remain anonymous to the intended parents during treatment (although they may have access to some non-identifying information about the donor). Nevertheless, the child can request the National Council for Medically Assisted Reproduction access to the donor’s personal information (full name) once they turn 18. Considering this legal framework, the number of previous donors who were contacted and asked whether they would maintain their donation despite the non-anonymity was residual. The identity-release framework did not seem to have affected the number of donations either. Donations are more frequent in private clinics than in the Portuguese public gamete bank, and this leads to waiting lists that can reach two years for a treatment involving oocytes or sperm donation. In this context, efforts to increase gamete donation, particularly in the National Health Service, are crucial. A study is currently being conducted in Portugal to pinpoint the main reasons why people do not consider being gamete donors. Preliminary results in a sample comprising 297 participants (82.2% females), with a mean age of 25.43 (SD = 7.88) years old and a mean of 14.09 (SD = 2.06) years of education, revealed that 73 (24.6%) stated that they would not consider being a donor because of the non-anonymity and 39 (13.2%) indicated that they would not consider becoming a donor due to concerns about being contacted in the future and requested responsibilities. These results may contribute to informing future initiatives aiming at promoting awareness on the topic of gamete donation. Another relevant topic is secrecy, which refers to parents not disclosing information to their offspring or their social group about donated gametes’ conception. Disclosing is recommended as an ongoing process, preferably when the child is young. This disclosure process may benefit from counselling or other support resources (e.g., children’s books, patients’ associations).

Practical and ethical considerations when sperm donors die.

This paper considers the practical and ethical issues related to the death of a sperm donor. It looks at whether sperm banks should check whether the donor is alive at the time the spermatozoa is made available. Knowing that the donor has died in combination with the cause of death can provide important medical information but the chance is very small. However, when the information is available, it may help to decide whether to tell previous recipients and/or to block the remaining samples for future use. A second advantage may be that the donor's offspring can be informed that contact will not be possible and that recipients who are planning to order spermatozoa from an identity-release donor can be told that the donor has died. However, these advantages presume that identifiable equals contactable while there is no strict link between these two conditions.

Parents' disclosure to their donor-conceived children in the last 10 years and factors affecting disclosure: a narrative review.

Disclosure of donor conception has been advocated in several jurisdictions in recent years, especially in those that practice identity-release donation. However, research on disclosure decisions has not been consolidated systematically in the last 10 years to review if parents are telling and what factors may be impacting their decisions. Are parents disclosing to their donor-conceived children, and what factors have influenced their disclosure decisions across different contexts and family forms in the last 10 years? A bibliographic search of English-language, peer-reviewed journal articles published between 2012 and 2022 from seven databases was undertaken. References cited in included articles were manually scrutinized to identify additional references and references that cited the included articles were also manually searched. Inclusion criteria were articles focused on parents (including heterosexual, single mothers by choice, same-sex couples, and transsexual) of donor-conceived persons in both jurisdictions with or without identity-release provisions. Studies focused solely on surrogacy, donors, donor-conceived persons, or medical/fertility staff were excluded as were studies where it was not possible to extract donor-recipient parents' data separately. Both quantitative and qualitative studies were included. Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed and Joanna Briggs Institute Critical Appraisal Tools for Systematic Reviews were used to assess article quality and bias. Thirty-seven articles met the inclusion criteria representing 34 studies and 4248 parents (including heterosexual, single, same-sex, and transsexual parents although the majority were heterosexual) from countries with anonymous donation and those with identity-release provisions or who had subsequently enacted these provisions (Australia, Belgium, Finland, France, Hong Kong, Middle East, Spain, Sweden, the UK, and the USA) A general trend towards disclosure was noted across these groups of parents with most disclosing to their donor-conceived children before the age of 10 years. Further, the majority of those who had not yet told, reported planning to disclose, although delayed decisions were also associated with lower disclosure overall. Same-sex and single parents were more likely to disclose than heterosexual parents. There was recognition of disclosure as a process involving ongoing conversations and that decisions were impacted by multiple interacting intrapersonal, interpersonal, and external contextual and social factors. Methodological limitations, such as the different population groups and contexts from which participants were drawn (including that those parents who choose not to disclose may be less likely to participate in research), are acknowledged in integrating findings. This review has reinforced the need for a theoretical model to explain parents' disclosure decisions and research exploring the role of legislative provisions, culture, and donor/family type in decision-making. Greater ongoing access to psychological support around disclosure may be important to promote parent and family well-being.

Disciplined parents and autonomous children: information sharing as governing device in Swedish identity-release gamete donation

Abstract This article analyses shifts and continuities in Swedish regulation of information sharing in identity-release donor conception. At a time when families include both solo and same-sex parenting, I draw on a practice-oriented method to compare legal and pre-legislative documents from the early 1980s with those of the late 2010s as developed in a Swedish national context. Following the turn to openness in donor conception, I discuss the practical implications of framing access to information from the hospitals’ so-called ‘special medical record’ as a children’s right, when information is in fact only available after ‘maturity’ is reached. Furthermore, I show how a significant change in the understanding of child–parent relationships in donor-conceived families is articulated in the 2019 legislation. If early policy documents portrayed donor-conceived children as potentially problematic for not ‘knowing their origin’, I argue that now it is parents in donor-conceived families who are constructed as potentially problematic. Drawing on critical kinship theory, I conclude that Swedish policy-making on information sharing in donor conception relies on a symbolic rather than material understanding of genetic relatedness that fails to acknowledge how different family forms might have different needs. Based on these findings, I suggest that policymakers take into account the implications a changing view on family life and genetics have for children and parents following donor conception.

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

Research questionWhat are the motives and experiences of donor-conceived persons (DCP) who search for and receive information about their identity-release sperm donor? DesignA 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. ResultsThe 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. ConclusionsObtaining 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.

Embryo donation: Counselling practice issues and dilemmas within the context of identity-release donor programmes

Embryo donation (ED) involves the donation of surplus embryos post family formation to others in need. Commensurate with Australian and New Zealand legislation and policy, ED is practiced as an identity-release programme shaped by four paramount principles. These include: the need to consider the longitudinal health and well-being of donor-conceived children born from assisted reproductive technologies (ART); recognition that offspring should be made aware of and be able to access information about their genetic origins; awareness that the short and long-term health and psychological welfare of other stakeholders (i.e., recipients and donors) should be ensured; and finally, that all donations are altruistic. Whilst embedded in ART legislation or professional guidelines, how these principles are operationalized through counselling in both countries remains variable. In this paper, we draw upon Australian and New Zealand research, legislation and policy shaping the counselling milieu. We highlight some of the key clinical issues that counsellors need to explore with participants of an ED arrangement and the implications of these as they apply to dilemmas within counselling practice such as counsellor roles and responsibilities.

Same-sex mothers' experiences of equal treatment, parenting stress and disclosure to offspring: a population-based study of parenthood following identity-release sperm donation.

What are the experiences of same-sex mothers following identity-release sperm donation regarding equal treatment in society, parenting stress and disclosure to child? Mothers predominantly reported equal treatment in society, low levels of parenting stress and early disclosure of the donor conception to the child, and half of the couples had also informed the child of his/her right to obtain the donor's identity. The number of two-mother families is increasing, and previous studies have reported about challenges related to heteronormativity, discrimination and the status of the non-birth mother. Same-sex mothers have been found to disclose the child's donor conception earlier than different-sex parents, but little is known regarding disclosure of the child's right to obtain identifying information about the donor. The present study concerns the fourth wave of data collection of a nation-wide longitudinal study. A total of 143 same-sex mothers (73% response rate) following identity-release sperm donation completed individual surveys when their donor-conceived child had reached age 7. These women represent a total of 82 couples who had undergone sperm donation treatment. The study is part of the longitudinal Swedish Study on Gamete Donation (SSGD). Couples accepted for gamete donation treatment at seven Swedish University hospitals were recruited between 2005 and 2008 and were requested to complete postal surveys during four waves of data collection. The present study sample includes same-sex mothers who completed a survey when their donor-conceived child had reached 7 years of age. Data were collected with the Swedish Parenting Stress Questionnaire (SPSQ), and study-specific items on experiences of treatment in society and disclosure behavior. Group comparisons (birth mothers vs non-birth mothers) were conducted using Chi2-tests, independent t-tests and Mann-Whitney U-tests, and written comments provided for open-response items were analyzed by qualitative content analysis. The mothers were generally open about the child's donor conception and the large majority (>80%) reported being treated positively and in the same way as other parents. However, satisfaction with treatment in health care settings was significantly lower than that reported in contacts with the child's school and recreational activities (P < 0.001) and open-response comments indicate that this may be related predominantly to heteronormative language and assumptions. Birth mothers and non-birth mothers reported similar treatment in society and similar levels of parenting stress. All but one couple had already talked with their 7-year-old child about his/her conception with donor sperm. Half of the couples had also informed the child about his/her opportunity to obtain identifying information about the donor, and remaining couples planned later disclosure. Children's reactions were generally described as neutral, positive or characterized by interest and curiosity. The present study was performed within the context of the Swedish legislation on identity-release donation, which limits the generalizability to same-sex couples using anonymous or known sperm donors. Although no evidence of attrition bias was found, it is possible that those couples who initially declined participation in the SSGD (23%) or dropped out at the fourth wave of data collection (27%) differ from the study sample in terms of variables that we were unable to control for. The present finding that most same-sex mothers in a population-based sample experience equal treatment in society is encouraging and validates previous results from predominantly qualitative studies. Nevertheless, the fact that a subgroup experiences discrimination and less favorable treatment indicates that further action is needed, particularly in child health care settings. The present study is the first to report on the timing of parents' disclosure of the child's right to identifying donor information and suggests that disclosure during preschool ages is feasible and does not appear to be related to negative consequences. In view of the increased availability and use of identity-release donation, there is a pressing need to investigate parents' intentions, behaviors and needs with regard to talking with their child about his/her opportunity to obtain the donor's identity. Financial support from the Swedish Research Council (2013-2712) and the Swedish Research Council for Health, Working Life and Welfare (2014-00876). There are no conflicts of interest to declare. N/A.

'I'm the only mum she knows': parents' understanding of, and feelings about, identity-release egg donation.

STUDY QUESTIONHow do parents understand and feel about identity-release egg donation?SUMMARY ANSWERAlmost one-third of mothers and fathers did not understand the identifiable nature of their egg donation; mothers expressed complex and sometimes difficult feelings about the prospect of future donor–child contact.WHAT IS KNOWN ALREADYIdentity-release egg donation has been the only treatment option available to patients wishing to pursue this route to parenthood in the UK since 2005. However, little is known about how well parents understand this legislation, and how they feel about potential donor–child contact.STUDY DESIGN, SIZE, DURATIONThis qualitative interview study included 61 mothers and 51 fathers whose 5-year-old children were conceived via identity-release egg donation. Interviews were conducted between April 2018 and December 2019.PARTICIPANTS/MATERIALS, SETTING, METHODSData are reported from phase two of a longitudinal study of families created using open-identity egg donation. In-depth, semi-structured interviews were conducted with mothers and fathers. The interviews contained a section on what parents understood about the identifiable nature of the donor. These data were analysed using qualitative content analysis. Mothers who understood the identifiable nature of their egg donation (n = 44) were then asked about their thoughts and feelings regarding the prospect of future donor–child contact. Mothers’ narratives were analysed using thematic analysis.MAIN RESULTS AND THE ROLE OF CHANCEAlmost one-third of parents (28% of mothers, n = 17; 31% of fathers, n = 16) did not understand the identifiable nature of their egg donation. Mothers’ and fathers’ misunderstandings about identity-release egg donation fell into two categories: (i) Unclear about identity-release and (ii) Belief that the donor is anonymous. Reflexive thematic analysis revealed that egg donation mothers’ feelings about identity-release donation could be understood via three organizing themes: (i) identity-release as a threat, (ii) acceptance: it is what it is and (iii) embracing identity-release. The findings indicated that egg donation mothers utilized various strategies to manage their feelings about identity-release egg donation in day-to-day life, and each theme was associated with at least one coping strategy.LIMITATIONS, REASONS FOR CAUTIONParticipants were predominantly from White, middle-class backgrounds. Further research with a more diverse sample is needed to improve generalizability.WIDER IMPLICATIONS OF THE FINDINGSThese findings indicate that parents would benefit from more comprehensive provision of information, both at time of treatment and following conception, to ensure they have fully understood the nature of the donation. Parents may also benefit from follow-up care to help manage any complex or difficult feelings about donor–child contact.STUDY FUNDING/COMPETING INTEREST(s)This research was supported by a Wellcome Trust Collaborative Award [208013/Z/17/Z]. The authors have no conflicts of interest to declare.TRIAL REGISTRATION NUMBERN/A.

O-211 Families created through identity-release egg donation: parents’ understanding of, and feelings about, donor identification in early childhood

Abstract Study question How well do parents understand identity-release donation, and how do they feel about potential donor-child contact? Summary answer Almost one-third of mothers (28%) and fathers (31%) did not understand the identifiable nature of their egg donation. Mothers expressed considerable ambivalence about donor-child contact. What is known already Egg donation is an increasingly common method of conception for women who are unable to use their own eggs. Identity-release egg donation has been the only treatment option available to patients wishing to pursue this route to parenthood in the UK since 2005. Despite this, little is known about how well parents understand this legislation, and how they feel about potential donor-child contact. At 18 years, donor-conceived offspring can request identifying information about their donor. The first UK cohort of identity-release offspring will turn 18 in 2023; understanding parents’ comprehension of, and feelings about, identity-release is therefore particularly timely. Study design, size, duration Data are reported from phase two of a longitudinal study of families created using open-identity egg donation, when children were aged five. At phase one, 85 families were recruited through 12 UK fertility clinics. An 85% response rate was subsequently achieved at phase two. A sub-sample of sixty-one mothers and 51 fathers were included in the present analyses. This qualitative investigation explored parents’ level of understanding of, and egg donation mothers’ feelings about, identity-release donation. Participants/materials, setting, methods In-depth, semi-structured interviews were conducted with mothers and fathers. The interviews contained a section on what parents understood about the identifiable nature of the donor. These data were analysed using qualitative content analysis. Mothers who understood the identifiable nature of their egg donation (n = 44) were then asked about their thoughts and feelings regarding the prospect of future donor-child contact. Mothers’ narratives were analysed using thematic analysis. Main results and the role of chance Almost one third of parents (27.9% of mothers, n = 17; 31.4% of fathers, n = 16) did not understand the identifiable nature of their egg donation. Qualitative content analysis revealed two main types of misunderstanding: i) parents whose understanding of identity-release was incorrect or incomplete (n = 26, 10 mothers, 13 fathers) and ii) parents who believed their donor was anonymous (n = 10, 7 mothers, 3 fathers). Thematic analysis revealed that egg donation mothers’ feelings about identity-release donation could be understood in relation to three main themes: 1) Identity-release as a threat, 2) Acceptance: it is what it is, and 3) Embracing identity-release. Mothers had complex and sometimes contradictory feelings about the prospect of future donor-child contact, and used a number of strategies to manage those feelings in day-to-day life. Donor-child contact was commonly perceived as a threat to the mother-child relationship, to the child, and to the donor. Conversely, the possibility of future donor-child contact was viewed by some mothers as an opportunity to be embraced; access to the donor’s identifying information was seen as essential to the child’s identity, and as a gateway to a broader family network. Limitations, reasons for caution Participants were predominantly from White, middle-class backgrounds. Further research with a more diverse sample is needed to improve generalisability. However, no other research has yet examined egg donation parents’ understanding of, and feelings about, identity-release donation in the UK. This research is therefore an important addition to the limited literature. Wider implications of the findings These findings indicate that parents would benefit from more comprehensive provision of information, both at time of treatment and following conception, to ensure they have fully understood the nature of the donation. Parents may also benefit from follow-up care to help manage any complex or difficult feelings about donor-child contact. Trial registration number N/A

Psychological adjustment in disclosing and non-disclosing heterosexual-couple families following conception with oocytes or spermatozoa from identity-release donors

Research questionIs there a relationship between disclosure and psychological adjustment in heterosexual-couple families following oocyte donation and sperm donation when the child is 7 years old? DesignThis was a cross-sectional study of heterosexual couples with 7- to 8-year-old children conceived with identity-release oocyte donation (n = 83, response rate 56%) or sperm donation (n = 113, response rate 65%). Participants individually completed instruments for the assessment of parents’ emotional distress (HADS), parenting stress (SPSQ) and relationship quality (ENRICH), and their child's psychological adjustment (SDQ-Swe) and reported whether they had talked with their child about their donor conception. ResultsAbout half of parents had talked with their child about their donor conception (oocyte donation 61%, sperm donation 58%). Separate analyses for mothers and fathers showed no main effects of disclosure or type of donation on the outcomes, nor were there any interaction effects. Overall, mothers and fathers in oocyte donation and sperm donation families were found to be well adjusted, reporting within-normal range levels of anxiety, depression and parental stress, and a high relationship quality. The children were well adjusted, with low levels of emotional and behavioural problems. ConclusionsOverall, the present results confirm previous research indicating that early disclosure of the donor conception to children is not associated with negative outcomes for parents or children. Heterosexual couples using oocyte or sperm donation should be informed that disclosure when the child is 7–8 years old is not detrimental to the psychological adjustment of families.

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

STUDY QUESTIONWhat 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 ANSWERFollowing 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 ALREADYIn 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, DURATIONA 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, METHODSA 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 CHANCEOf ∼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 CAUTIONThe 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 FINDINGSThe 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 INTERESTFinancial support from The Swedish Research Council. There are no conflicts of interest to declare.TRIAL REGISTRATION NUMBERN/A.

Well-being, Gamete Donation, and Genetic Knowledge: The Significant Interest View.

The Significant Interest view entails that even if there were no medical reasons to have access to genetic knowledge, there would still be reason(s) for prospective parents to use an identity-release donor as opposed to an anonymous donor. This view does not depend on either the idea that genetic knowledge is profoundly prudentially important or that donor-conceived people have a right to genetic knowledge. Rather, it turns on general claims about (1) parents' obligations to help promote their children's well-being and (2) the connection between a person's well-being and the satisfaction of what I call their "worthwhile significant subjective interests." To put this view (too) simply, the fact that a donor-conceived person-who knows she is donor-conceived-is likely to be very interested in acquiring genetic knowledge gives prospective parents a weighty reason to use an identity-release donor. This is because parents should promote their children's well-being through the satisfaction of their children's worthwhile significant interests.

The opposite of a step parent - The genetics without any of the emotion: 'sperm donors' reflections on identity-release donation and relatedness.

This paper draws upon data from an online survey with closed- and open-ended questions completed by 168 identity-release sperm donors who had all donated in the UK between 2010 and 2016. Paying particular attention to the qualitative data obtained from the donors’ responses to the open-ended questions, this paper explores the sperm donors’ thoughts and feelings about being an identity-release donor and about future information exchange and contact with offspring conceived with their gametes. It shows that the majority of donors regarded identity-release donation as their preferred method of donation, supported the removal of anonymity, did not have concerns about being an identity-release donor and indeed saw positives for both the donor-conceived offspring and themselves. However, it also highlights that the donors’ thoughts and feelings about being an identity-release sperm donor, how they saw themselves in relation to the individual conceived with their donation, and their preferences for information exchange and contact, varied greatly. The paper explores how identity-release donation is surrounding by many unknowns and consequentially sperm donors struggle to conceptualize what it means to be an identity-release sperm donor. As well as adding to the literature on donor conception, relatedness and kinship, by giving voice to sperm donors’ own views and experience of the identity-release regulatory context, and their thoughts and feelings about future information exchange, this paper will help policy makers and clinicians prepare for the imminent time when donor-conceived individuals in the UK can start requesting their donor’s identity.

Positioning the donor in a new landscape-mothers' and fathers' experiences as their adult children obtained information about the identity-release sperm donor.

STUDY QUESTIONHow do heterosexual parents experience identity-release donation when adult children have obtained information about their sperm donor?SUMMARY ANSWERAdult offspring’s receipt of identifying information about the sperm donor challenged the fathers’ role as a parent, which was reflected in how parents positioned the donor in relation to the family.WHAT IS KNOWN ALREADYAn increasing number of countries provide access to treatment with identity-release or ‘open-identity’ donors. However, there is limited knowledge about how parents experience and manage the situation when adult offspring obtain identifying information about the donor and may even establish contact with him.STUDY DESIGN, SIZE, DURATIONThis qualitative interview study included 23 parents whose offspring had obtained information about their sperm donor. Interviews were conducted from October 2018 to January 2019.PARTICIPANTS/MATERIALS, SETTING, METHODSA purposive sample of parents (15 mothers and 8 fathers) was recruited via adult offspring, who had requested identifying donor information at five Swedish University hospitals. All participating parents were part of a heterosexual couple who had conceived with sperm from an identity-release donor. Individual semi-structured interviews were conducted face-to face or via telephone, and transcribed audio recordings were analyzed using reflexive thematic analysis.MAIN RESULTS AND THE ROLE OF CHANCEThe parents expressed diverse experiences related to their parenthood and the presence of the donor after offspring had obtained information about him; these were described in two themes. The theme ‘Navigating (in)visible markers of parenthood’ describes parenthood as embedded with dichotomous meanings of nature and nurture that parents navigated in relation to social approval. The theme ‘Positioning the donor in a new landscape’ describes how parents managed the presence of the donor by positioning him at a distance or acknowledging him as a person or even as part of the family, while some struggled to position him, giving rise to ambivalent feelings. The absence of genetic connectedness challenged the father’s role as parent, which was reflected in parents’ positioning of the donor.LIMITATIONS, REASONS FOR CAUTIONThe study was performed within the context of the Swedish legislation on identity-release donation and is based on experiences of heterosexual couples who had used sperm donation and had informed their offspring about their donor conception. This, together with the fact that parents’ accounts were predominantly represented by mothers, must be taken into consideration regarding transferability to other populations.WIDER IMPLICATIONS OF THE FINDINGSNegotiations of social and genetic parenthood are still present among parents many years after treatment and may resurface when adult offspring obtain the donor’s identity. Access of the adult offspring to identifying information about the donor may have unexpected consequences for family relations, including expanding the family to include the donor. Challenges related to male infertility and family dynamics indicate that parents should have access to counseling and support to manage family life with varying genetic linkage within and outside the family unit.STUDY FUNDING/COMPETING INTEREST(S)Financial support was from The Swedish Research Council (Grant 2013-2712). There are no conflicts of interest to declare.TRIAL REGISTRATION NUMBERN/A.

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

STUDY QUESTIONDoes the theory of planned behaviour (TPB) contribute to understanding parents’ intention to share information about genetic origin with their donor-conceived child?SUMMARY ANSWERParents’ 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 ALREADYDespite 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, DURATIONA 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, METHODSThe 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 CHANCEMore 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 CAUTIONThe 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 FINDINGSApplication 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 NUMBERN/A

Tracing pathways of relatedness: how identity-release gamete donors negotiate biological (non-)parenthood

This article draws on an interview study with UK ‘identity-release’ sperm and egg donors, exploring how, in the context of a new ethic of openness around donor conception, they articulate their role in relation to offspring. I show that participants neither dismissed, nor straightforwardly activated, the relational significance of the ‘biological’ substance they donated. Instead, they renegotiated its meaning in ways which do not map straightforwardly on to established kinship roles. Building on a conception of personal lives and selves as fundamentally relational (Mason, 2004; Smart, 2007; May, 2013), I show how donors managed the conflicting demands of identity-release donation by tracing their relatedness to offspring along particular pathways (while diminishing others); the inherent connectedness of their own lives and selves enabled them to construct indirect non-parental connections with offspring as the siblings of their own children or the children of their friends or sisters.

Managing absence and presence of child-parent resemblance: a challenge for heterosexual couples following sperm donation.

This qualitative interview study sought to gather and better understand heterosexual parents' experiences of managing resemblance and non-resemblance between child and parent in an identity-release donor programme. The study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD), including all fertility clinics performing gamete donation in Sweden. A sample of participants in the SSGD, consisting of 30 heterosexual parents with children aged 7–8 years following identity-release sperm donation, participated in individual semi-structured interviews. This study concerns a secondary analysis of the interview data. The results show how donor-conceiving parents experience the presence and absence of child–parent resemblance, and how they navigate between the importance of genetic connectedness and of ‘doing parenthood’ through social interactions. The analysis resulted in three categories: ‘resemblance through nature or nurture’, ‘non-resemblance brings the donor to the front’ and ‘feelings about and coping with resemblance talk’. The first two categories deal with the intrapersonal aspects of physical and non-physical resemblance, while the last category includes aspects of resemblance in relation to persons outside the core family. The presence or absence of parent–child resemblance regarding both physical and non-physical characteristics appears to constitute a considerable challenge for heterosexual couples with school-aged children following sperm donation.

Attitudes of anonymous and identity-release oocyte donors towards future contact with donor offspring.

What are the attitudes and expectations of past oocyte donors concerning contact with their donor offspring and contact between donor offspring and their own children? The large majority (95%) of open-identity oocyte donors, as well as voluntarily registered donors (registered before the Finnish 2007 ART law), expressed positive or neutral feelings towards contact with their donor offspring and mainly positive expectations towards contact between donor offspring and their own children. Although there is a growing support for openness and identity-release programmes in gamete donation, there is not much knowledge on how donors feel about potential contact with their offspring. Most previous studies have investigated donor expectations with a relatively short follow-up time, using small samples or participants in voluntary donor linkage services. A retrospective cross-sectional survey of all women who had donated oocytes between 1990 and 2012 at three fertility clinics in Finland was carried out in 2013. A self-administered questionnaire was sent out to a total of 569 former oocyte donors. In total, 428 former oocyte donors answered a questionnaire assessing experiences and attitudes related to donation (response rate 75.2%). In this study, 358 donors who were unknown to the recipient were included. The mean follow-up time after the donation was 11.2 years. Before 2008, donors were non-identifiable but could voluntarily consent to release their identifying information to their donor offspring. After 2008, persons born as a result of gamete donation can, from the age of 18, receive information identifying the donor. Altogether 290 respondents had participated in a donation programme in 1990-2007 (before the Finnish ART-law), and 68 participated after the enactment of the ART-law, enabling us to compare attitudes by type of legislation during donation. Most voluntarily registered and open-identity donors welcomed or were neutral to potential contact with their donor offspring but were slightly more cautious towards contact between their own children and a donor-conceived child. Open-end comments revealed some ambiguity and uncertainty as to what to expect from such contact and feelings varied from neutral curiosity and interest to desire to meet the donor-conceived child. It is not possible to assess whether the opinions of the study participants is representative of all donors in 1990-2012, as 25% of all contacted former donors did not respond to the survey. This study is one of only a few studies among oocyte donors to evaluate long-term psychosocial consequences of the donation and expectations towards contact with donor offspring, using a large sample. Results from this study show that persisting concerns about adverse outcomes of identity release policies are largely unwarranted, but there is a need to develop counselling practices and material for identity-release donors about how to prepare for and adjust to potential contact with donor offspring. This study was supported by grants from the Medical Society Life and Health, and from the Otto A. Malm Foundation. The authors have no competing interests to report. N/A.

Informing offspring of their conception by gamete or embryo donation: an Ethics Committee opinion

This document discusses the ethical implications of informing offspring about their conception using gamete or embryo donation. It replaces the 2013 ASRM Ethics Committee document of the same name (Fertil Steril 2013;100:45-9).

Being an identity-release donor: a qualitative study exploring the motivations, experiences and future expectations of current UK egg donors

The objective of this study was to examine the motivations, experiences and future expectations of identity-release egg donors in the UK following the removal of donor anonymity and the increase in financial compensation for egg donation. This exploratory, in-depth qualitative study comprised semi-structured interviews with 11 women who had attended an egg donation screening appointment at a UK clinic during a four-month period in 2014. Interviews were conducted two to six weeks after the woman had donated or had withdrawn/been rejected from the donation process. Participants’ primary motivation for donating was to help infertile women have their ‘own child’, and the recent increase in financial compensation did not seem to play a significant role in their decision. All were happy to be identifiable and contacted by children born as a result of their donation. However, some were hesitant about providing non-identifying information about themselves for these offspring and wished for further information about the recipient(s) of their eggs and the outcome of their donation. Whilst this study was limited due to the small sample size, it is the first study of UK egg donors following the rise in donor compensation and suggests that other strategies may be more effective in increasing donor numbers.