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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.
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OBJECTIVE: To understand how the Donor Conception Identity Questionnaire (DCIQ) correlates with mental health and explore differences in the DCIQ between donor conceived people who were actively searching for donor connections to those who were not and those who had found their donor connections to those who had not. DESIGN: Cross-sectional survey. SETTING: Online survey conducted within United Kingdom. PATIENT(S): A total of 88 donor conceived adults ranging in age from 18 to 70 (mean, 34.27 years; median, 31 years). A total of 39 participants were actively searching for their donor connections, and 49 were not. INTERVENTION(S): Donor conception identity was measured using a questionnaire and scores were correlated with existing measures of mental health. MAIN OUTCOME MEASURE(S): Participants completed the DCIQ and measures of well-being, satisfaction with life, identity, pride, and stigma. RESULT(S): Factor analysis of items from the DCIQ identified four domains: concern and preoccupation; internalized stigma; pride and acceptance; and openness and understanding. The identified factors correlated with scales of psychological and social well-being. Active searchers scored higher than non-active searchers on "concern and preoccupation" and "internalized stigma". Donor conceived individuals who had found their donor connections scored lower on "internalized stigma" and higher on "openness and understanding" compared with those who had not found their donor connections. CONCLUSION(S): The findings of the present study show that scores on the DCIQ correlate with existing measures of psychological and social well-being. Furthermore, donor conceived individuals searching for their donor connections differ from those not actively searching on key domains of the DCIQ. Implications for future avenues of study and support for donor conceived people are discussed.
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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.
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Doadores de Tecidos , Humanos , Bélgica , Masculino , Adulto , Feminino , Estudos Transversais , Doadores de Tecidos/psicologia , Inseminação Artificial Heteróloga/psicologia , Espermatozoides , Inquéritos e Questionários , Pessoa de Meia-Idade , Adulto Jovem , Confidencialidade/psicologia , Minorias Sexuais e de Gênero/psicologia , Minorias Sexuais e de Gênero/estatística & dados numéricos , Heterossexualidade/psicologia , Heterossexualidade/estatística & dados numéricos , Adolescente , Homossexualidade Feminina/psicologiaRESUMO
This study sought to investigate if heterosexual-couple parents with adolescent children following identity-release oocyte donation (OD), sperm donation (SD) or standard IVF differed with regard to psychological distress, family functioning, and parent-child relationships. The prospective longitudinal Swedish Study on Gamete Donation consists of couples recruited when starting treatment between 2005 and 2008 from seven Swedish university hospitals providing gamete donation. This study concerns the fifth wave of data collection and included a total of 205 mothers and fathers with adolescent children following OD (n = 73), SD (n = 67), or IVF with own gametes (n = 65). OD/SD parents had used identity-release donation and most had disclosed the donor conception to their child. Parents answered validated instruments measuring symptoms of anxiety and depression (HADS), family functioning (GF6+) and parent-child relationship. Results found that parents following OD or SD did not differ significantly from IVF-parents with regard to symptoms of anxiety and depression, family functioning, and perceived closeness and conflicts with their child. Irrespective of treatment group, most parents were within normal range on psychological distress and family functioning and reported positive parent-child relationships. However, SD mothers to a larger extent reported anxiety symptoms above cut-off compared to OD mothers (31% vs. 7.3%, p = 0.018). In conclusion, the present results add to previous research by including families with adolescent children following identity-release oocyte and sperm donation, most of whom were aware of their donor conception. Largely, our results confirm that the use of gamete donation does not interfere negatively with mothers' and fathers' psychological well-being and perceived family functioning.
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Fertilização in vitro , Doação de Oócitos , Relações Pais-Filho , Humanos , Feminino , Masculino , Fertilização in vitro/psicologia , Adolescente , Adulto , Doação de Oócitos/psicologia , Pais/psicologia , Ansiedade , Suécia , Depressão/psicologia , Seguimentos , Estudos Longitudinais , Estudos Prospectivos , Bem-Estar PsicológicoRESUMO
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.
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Técnicas de Reprodução Assistida , Técnicas de Reprodução Assistida/legislação & jurisprudência , Humanos , Austrália , Regulamentação GovernamentalRESUMO
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.
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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.
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Triagem e Testes Direto ao Consumidor , Humanos , Adulto , Masculino , Reino Unido , Adulto Jovem , Triagem e Testes Direto ao Consumidor/psicologia , Adolescente , Testes Genéticos , Feminino , Inseminação Artificial Heteróloga/psicologia , Doadores de Tecidos/psicologiaRESUMO
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.
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Concepção por Doadores , Pais , Humanos , Feminino , Masculino , Estudos Longitudinais , Concepção por Doadores/psicologia , Adulto , Criança , Pais/psicologia , Relações Pais-Filho , Doação de Oócitos/psicologia , Suécia , Revelação , Inseminação Artificial Heteróloga/psicologia , Estudos Prospectivos , Heterossexualidade/psicologia , Teoria do Comportamento PlanejadoRESUMO
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.
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Pais , Doadores de Tecidos , Humanos , Masculino , Adulto , Doadores de Tecidos/psicologia , Feminino , Pais/psicologia , Países Baixos , Aconselhamento , Fatores Etários , Inseminação Artificial Heteróloga/psicologia , Inseminação Artificial Heteróloga/legislação & jurisprudência , Pessoa de Meia-Idade , Espermatozoides , Conselheiros/psicologia , Adulto JovemRESUMO
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.
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Doação de Oócitos , Doadores de Tecidos , Adulto , Humanos , Doação de Oócitos/psicologia , Doadores de Tecidos/psicologia , Aconselhamento , DNA , Reino UnidoRESUMO
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.
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Revelação , Inseminação Artificial Heteróloga , Humanos , Masculino , Feminino , Sêmen , Doadores de Tecidos , Motivação , EspermatozoidesRESUMO
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.
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Revelação , Doação de Oócitos , Humanos , Células Germinativas , Doadores de Tecidos , ComunicaçãoRESUMO
Objective: This study aimed to create and develop a well-designed, theoretically driven, evidence-based, digital, decision Tool to Empower Parental Telling and Talking (TELL Tool) prototype. Methods: This developmental study used an inclusive, systematic, and iterative process to formulate a prototype TELL Tool: the first digital decision aid for parents who have children 1 to 16 years of age and used donated gametes or embryos to establish their families. Recommendations from the International Patient Decision Aids Standards Collaboration and from experts in decision aid development, digital health interventions, design thinking, and instructional design guided the process. Results: The extensive developmental process incorporated researchers, clinicians, parents, children, and other stakeholders, including donor-conceived adults. We determined the scope and target audience of the decision aid and formed a steering group. During design work, we used the decision-making process model as the guiding framework for selecting content. Parents' views and decisional needs were incorporated into the prototype through empirical research and review, appraisal, and synthesis of the literature. Clinicians' perspectives and insights were also incorporated. We used the experiential learning theory to guide the delivery of the content through a digital distribution plan. Following creation of initial content, including storyboards and scripts, an early prototype was redrafted and redesigned based on feedback from the steering group. A final TELL Tool prototype was then developed for alpha testing. Conclusions: Detailing our early developmental processes provides transparency that can benefit the donor-conceived community as well as clinicians and researchers, especially those designing digital decision aids. Future research to evaluate the efficacy of the TELL Tool is planned.
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Background: In Brazil, donor anonymity is mandatory; however, the tendency of Brazilians towards the practice is unknown. In this study, an attempt was made to investigate whether couples undergoing assisted reproductive technology (ART) have a different perception of anonymous versus identity-release gamete donation than a target population in Brazil. Methods: This cross-sectional study was performed from September 1, 2020 to December 15, 2020. For that purpose, surveys through online platforms were conducted, including either patients undergoing ART (ART-group, n=400) or subjects interested in the theme (interested-group, n=100) randomized by age at a 1:4 ratio. The survey collected information on the participants' attitudes towards anonymity of gamete donors, and answers were compared between the groups. Results: Most participants stated that the relationship between children and their parents would be affected by the child's knowledge of the origin of its conception. Most participants in the ART-group believed that the gamete donor's identity should not be revealed to the child, while only half of the interested-group stated the same. Most of the participants stated that "the donor's identity should be revealed if the child questions its biological origin". "From birth" was the second most common response, while "when the child turns 18 years old" and "sometime during teenage years" were less common answers. Conclusion: The attitudes of ART patients about anonymity are conservative, with most participants believing that family relationships may be affected if the child is aware of the origin of his/her conception. These patients also believe that the identity of the gamete donor should not be revealed to the child.
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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.
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Destinação do Embrião , Doadores de Tecidos , Humanos , Criança , Células Germinativas , Relações Pais-Filho , PaisRESUMO
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.
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Inseminação Artificial Heteróloga , Masculino , Humanos , Pais , Relações Familiares , Doadores de Tecidos , Relações Pais-FilhoRESUMO
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.
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Células Germinativas , Doadores de Tecidos , Humanos , Nova Zelândia , Altruísmo , EstudantesRESUMO
The experiences of donor-conceived adults have received relatively little research attention despite the increasing trend of gamete conception. In this qualitative study, ten donor-conceived adults: eight women and two men, were interviewed to explore their experience of being donor-conceived. The participants did not automatically have the right to access identifying information of their donors upon turning eighteen as they were born prior to the introduction of the 2004 Human Assisted Reproductive Technology (HART) Act in New Zealand. The overarching theme identified was a need for parents, donors, and the fertility industry to prioritise their longer-term wellbeing. To this effect, participants wanted recognition of the importance of their donor conception history for their identity, and called for early disclosure to be reinforced through open, ongoing conversations with their parents. They highlighted the need for support to process the implications of donor conception, and to search for and link with their donors. Study findings underscore the value of legislation and practices which enable disclosure in the context of ongoing openness and provide access to support for donor-conceived individuals.
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Concepção por Doadores , Masculino , Humanos , Adulto , Feminino , Revelação , Comunicação , Técnicas de Reprodução Assistida , Doadores de TecidosRESUMO
Objective: To identify factors influencing sperm donor willingness to participate in direct-to-consumer genetic testing, comfort with sharing genetically identifiable data in commercial genetic testing databases, and likelihood to donate sperm again. Design: Cross-sectional online anonymous survey. Setting: Multicenter, 2 large American sperm banks from July 1, 2020 to July10, 2021. Patients: Sperm donors from 1980 to 2020. Interventions: None. Main outcome measures: Associations between donor demographic characteristics, donation history, and attitudes toward direct-to-consumer genetic testing. Results: A total of 396 donors completed the survey. Most donations (61.5%) occurred from 2010 to 2020, and 34.3% were nonidentified donations. Nonidentified donors were less comfortable with their genetic data being shared than open-identity donors (25.4% vs. 43.8%) and were less likely than open-identity donors to donate sperm again (43.3% vs. 72.1%). Donors who donated after the inception of direct-to-consumer genetic testing in 2007 were less likely to participate in commercial genetic testing than those who donated before 2007 (25.8% vs. 37.1%). Most donors (87.4%) have disclosed their donation(s) to current partners, but fewer have disclosed them to their families (56.6%) or children (30.5%). Of the donors who had been contacted by donor-conceived persons, 79.5% were identified via direct-to-consumer genetic testing. Overall, 61.1% of donors would donate again regardless of direct-to-consumer genetic testing. Conclusions: Direct-to-consumer genetic testing is playing a dynamic role in sperm donor identification, but donors seem willing to donate again. Implication counseling regarding future linkage and contact from donor-conceived persons needs to be standardized for potential donors before donation.
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Contemporary UK egg and sperm donation exists in two predominant forms: (i) clinic-based, identity-release donation; and (ii) known donation, which can take place either inside or outside of the clinic context. Regulatory and clinical discussions of the latter currently focus, almost exclusively, on risk whereas identity-release is widely presented as the default route for both donors and recipients. Consequently, there is little support available for those potential donors and recipient parents who might prefer a known donor arrangement. In this commentary, we reflect on our sociological research with donors and parents through donor conception and argue that there are a number of reasons why known donation may, in some contexts, offer advantages over identity-release donation. Whilst this research also demonstrates that there can be challenges involved in known donation, these are not inevitable nor are challenges absent from identity-release routes. It is timely and important to question whether the current de-valuing of known donation compared with identity-release donation holds up to academic scrutiny. We argue for a more balanced approach in which the benefits and challenges of both known and identity-release routes are discussed with donors and recipients and for increased support for known donation in clinics and by regulatory bodies.