Survey on ART and IUI: legislation, regulation, funding, and registries in European countries-an update.

STUDY QUESTION: How are ART and IUI regulated, funded, and registered in European countries, and how has the situation changed since 2018? SUMMARY ANSWER: Of the 43 countries performing ART and IUI in Europe, and participating in the survey, specific legislation exists in only 39 countries, public funding varies across and sometimes within countries (and is lacking or minimal in four countries), and national registries are in place in 33 countries; only a small number of changes were identified, most of them in the direction of improving accessibility, through increased public financial support and/or opening access to additional subgroups. WHAT IS KNOWN ALREADY: The annual reports of the European IVF-Monitoring Consortium (EIM) clearly show the existence of different approaches across Europe regarding accessibility to and efficacy of ART and IUI treatments. In a previous survey, some coherent information was gathered about how those techniques were regulated, funded, and registered in European countries, showing that diversity is the paradigm in this medical field. STUDY DESIGN, SIZE, DURATION: A survey was designed using the SurveyMonkey tool consisting of 90 questions covering several domains (legal, funding, and registry) and considering specific details on the situation of third-party donations. New questions widened the scope of the previous survey. Answers refer to the situation of countries on 31 December 2022. PARTICIPANTS/MATERIALS, SETTINGS, METHODS: All members of the EIM were invited to participate. The received answers were checked and initial responders were asked to address unclear answers and to provide any additional information considered relevant. Tables resulting from the consolidated data were then sent to members of the Committee of National Representatives of ESHRE, requesting a second check. Conflicting information was clarified by direct contact. MAIN RESULTS AND THE ROLE OF CHANCE: Information was received from 43 out of the 45 European countries where ART and IUI are performed. There were 39 countries with specific legislation on ART, and artificial insemination was considered an ART technique in 33 of them. Accessibility is limited to infertile couples only in 8 of the 43 countries. In 5 countries, ART and IUI are permitted also for treatments of single women and all same sex couples, while a total of 33 offer treatment to single women and 19 offer treatment to female couples. Use of donated sperm is allowed in all except 2 countries, oocyte donation is allowed in 38, simultaneous donation of sperm and oocyte is allowed in 32, and embryo donation is allowed in 29 countries. Preimplantation genetic testing (PGT)-M/SR (for monogenetic disorders, structural rearrangements) is not allowed in 3 countries and PGT-A (for aneuploidy) is not allowed in 10; surrogacy is accepted in 15 countries. Except for marital/sexual situation, female age is the most frequently reported limiting criterion for legal access to ART: minimal age is usually set at 18 years and the maximum ranges from 42 to 54 with some countries not using numeric definition. Male maximum age is set in very few countries. Where third-party donors are permitted, age is frequently a limiting criterion (male maximum age ranging from 35 to 50; female maximum age from 30 to 37). Other legal restrictions in third-party donation are the number of children born from the same donor (or, in some countries, the number of families with children from the same donor) and, in 12 countries, there is a maximum number of oocyte donations. How countries deal with the anonymity is diverse: strict anonymity, anonymity just for the recipients (not for children when reaching legal adulthood age), a mixed system (anonymous and non-anonymous donations), and strict non-anonymity. Inquiring about donors' genetic screening showed that most countries have enforced either mandatory or scientific recommendations that exclude the most prevalent genetic diseases, although, again, diversity is evident. Reimbursement/compensation systems exist in more than 30 European countries, with around 10 describing clearly defined maximum amounts considered acceptable. Public funding systems are extremely variable. One country provides no financial assistance to ART/IUI patients and three offer only minimal support. Limits to the provision of funding are defined in the others i.e. age (female maximum age is the most used), existence of previous children, BMI, maximum number of treatments publicly supported, and techniques not entitled for funding. In a few countries reimbursement is linked to a clinical policy. The definitions of the type of expenses covered within an IVF/ICSI cycle, up to which limit, and the proportion of out-of-pocket costs for patients are also extremely dissimilar. National registries of ART are in place in 33 out of the 43 countries contributing to the survey and a registry of donors exists in 19 of them. When comparing with the results of the previous survey, the main changes are: (i) an extension of the beneficiaries of ART techniques (and IUI), evident in nine countries; (ii) public financial support exists now in Albania and Armenia; (iii) in Luxembourg, the only ART centre expanded its on-site activities; (iv) donor-conceived children are entitled to know the donor identity in six countries more than in 2018; and (v) four more countries have set a maximum number of oocyte donations. LIMITATIONS, REASONS FOR CAUTION: Although the responses were provided by well-informed and committed individuals and submitted to double checking, no formal validation by official bodies was in place. Therefore, possible inaccuracies cannot be excluded. The results presented are a cross-section in time, and ART and IUI frameworks within European countries undergo continuous modification. Finally, some domains of ART activity were deliberately left out of the scope of this survey. WIDER IMPLICATIONS OF THE FINDINGS: Our results offer a detailed updated view of the ART and IUI situation in European countries. It provides extensive answers to many relevant questions related to ART usage at the national level and could be used by institutions and policymakers at both national and European levels. STUDY FUNDING/COMPETING INTEREST(S): The study has no external funding, and all costs were covered by ESHRE. There were no competing interests.

Psychosocial outcomes of children born via embryo donation.

STUDY QUESTION: What are parents' perceptions of their relationships with and the psychosocial adjustments of their children who are born via embryo donation? SUMMARY ANSWER: Families created through embryo donation have well-adjusted parent-child relationships and reassuring child psychosocial outcomes. WHAT IS KNOWN ALREADY: Embryo donation is an effective and growing form of third-party reproduction, but there is limited research in this field. Prior studies suggest that families created through gamete donation function well regarding parent-child relationship quality and child behavioral and socioemotional adjustment. STUDY DESIGN, SIZE, DURATION: This is a cross-sectional survey study with 187 total participants. PARTICIPANTS/MATERIALS, SETTING, METHODS: Parents of children born via embryo donation were recruited nationally by contacting all embryo donation programs registered with the Society for Assisted Reproductive Technology Clinic Outcome Reporting System (SART CORS) as well as medically directed embryo donation or 'embryo adoption' centers. Participants completed three online Qualtrics questionnaires. The first was a survey including 33 questions on demographics, the procurement process, and self-reported obstetric outcomes. Participants also completed two standardized measures assessing children's behavior and parents' adjustment to parenthood: the Strengths and Difficulties Questionnaire (SDQ) and the Parental Acceptance-Rejection Questionnaire (PARQ). Scoring of the SDQ and PARQ was totaled and compared to standardized values (SDQ) or previously published results on other forms of gamete donation (PARQ), such as oocyte donation and sperm donation. MAIN RESULTS AND THE ROLE OF CHANCE: On the SDQ (n = 46), the average total difficulties scores by age were: 8.2 ± 0.98 for ages 2-4, 7.6 ± 0.93 for ages 5-10, and 3.5 ± 0.77 for ages 11-17; this is compared to the normal reported range of 0-13, which indicates that clinically significant psychosocial problems are unlikely. Across all ages and individual categories (emotional symptoms, conduct problem, hyperactivity, peer problem, prosocial), scores on the SDQ were within the normal ranges. The average PARQ score (n = 70) for all respondents was 27.5 ± 1.18 (range: 24-96), suggesting perceived parental acceptance. LIMITATIONS, REASONS FOR CAUTION: Because this study was cross-sectional, it could not capture familial relationships over time. This survey-based study design allows for potential selection bias (parents of well-adjusted children may be more likely to participate). Additionally, the overall sample size is relatively small; however, it remains one of the largest published to date. Another significant limitation to this study is the lack of generalizability: most participants were recruited from private, faith-based, embryo donation programs who are demographically similar. WIDER IMPLICATIONS OF THE FINDINGS: Though embryo donation is an established form of third-party reproduction, it is significantly less robustly studied compared to other forms of gamete donation (oocyte or sperm donation). This study provides a larger data set with a more expanded age range of children compared to the limited number of previously published studies. Furthermore, these findings indicate a high parental disclosure rate with respect to the use of embryo donation which contrasts previous findings. STUDY FUNDING/COMPETING INTEREST(S): No external funding source was utilized for the completion of this study. No conflicts are disclosed. TRIAL REGISTRATION NUMBER: N/A.

Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders.

RESEARCH QUESTION: What effect does direct-to-consumer genetic testing (DTCGT) have on information finding and sharing in relation to gamete donor conception? DESIGN: This study used in-depth qualitative interviews with parents through donor conception, donors, the relatives of donors and donor-conceived people who have used, or considered using, DTCGT. Interviews were conducted between September 2021 and February 2023. Sixty people defined themselves as having been affected by donor conception and DTCGT. Fifty-seven of these were resident in the UK at the time of interview. The final sample included 19 (spermatozoa, egg or embryo) donors, 25 donor-conceived people, 20 parents through donor conception and two relatives of donors. Five participants occupied more than one of these roles. RESULTS: The rise of DTCGT is affecting how information about donor conception is managed: it shifts patterns of knowledge about donor conception; increases flexibility regarding the age of access to information about donor relatives; can lead to a growing role for non-professionals, including wider family members, in gatekeeping information about donor conception; accentuates the effect of donor conception for donors' and the relatives of donor-conceived people; and shapes, and is shaped, by the formal regulatory donor information management systems. CONCLUSION: Fertility professionals should inform people using, or considering, donor conception, or (potential) donors, about the different ways DTCGT can affect sharing information about donor conception. Support is needed for those affected by these changes.

Surrogacy and the significance of gestation: Implications for law and policy.

Gestational surrogacy is ethically complex, generating very different responses in law and policy worldwide. This paper argues that contemporary surrogacy law and policy, across many jurisdictions, fail to give sufficient attention to the significance of the relationship between the child and the gestational surrogate. This failure risks repeating the mistakes of historical, discredited approaches to adoption and donor-assisted conception. This paper argues that proper recognition of the significance of gestation must be an organising principle in surrogacy law and policy. The paper begins by pointing to examples of surrogacy law and practice where the role of the gestator is unacceptably minimised, most notably the framing of the surrogate as a mere 'carrier'. It goes on to examine the nature of gestation, including consideration of contemporary scholarship on the metaphysics of pregnancy and emerging work in epigenetics, and argues that current evidence supports the view that the gestational relationship must be taken more seriously than it currently is. The paper then draws analogies with parenthood in donor-assisted conception and adoption to argue that approaches to parental status in novel family formations that fail to promote transparency and seek to deny the truth of familial relationships are doomed to fail. The paper concludes by suggesting some implications for law and policy that flow from placing sufficient emphasis on the gestational role. The overarching thesis of this paper is that gestational surrogacy is ethically permissible when these fundamental requirements are adhered to, and that surrogacy law should proceed on this basis.

The emergence and use of expanded carrier screening in gamete donation: A new form of repro-genetic selection.

With the continued expansion and commercialisation of fertility treatments, the selection and matching of donors have become more sophisticated and technologised. As part of this landscape, new form of genetic screening: 'expanded carrier screening' (ECS) is being offered as a technique to avoid the risk of donors passing on genetic conditions to future offspring. Allowing donors to be tested for hundreds of genetic conditions simultaneously, ECS marks a considerable departure from traditional 'family history' models of screening, which rely on an individual's knowledge of family health. There is growing evidence of a drive towards the use of ECS within the fertility sector, and a growing number of clinics are offering it for a fee, as part of an egg or sperm donation cycle or as an add-on to IVF treatment. In this article, we use methods of critical reflection to synthesise data from two studies to explore how ECS is being used to avoid genetic risk in IVF treatment using donor gametes. We suggest that ECS is a new form of repro-genetic selection-a selective reproductive technology-with specific and important implications for donors, recipients and clinicians and with the potential to reconfigure the scope and application of gamete donation. We examine these implications and conclude that the existing policy blind spot relating to this development in fertility treatment practice needs to be urgently addressed.

Predictors of gamete donation: a cross sectional survey study.

PURPOSE: In 2015, assisted reproductive technology (ART) accounted for 1.7% of all U.S. births, donor eggs accounted for over 17,000 started cycles in 2015, and donor sperm accounting for 6.2% of all cycles started in 2014. With increasing utilization of donor gametes as a method of assisting patients with infertility, the number of babies born each year utilizing gamete donation will also continue to increase. This study aimed to elucidate factors impacting decision to donate, amongst a representative national population. METHODS: A survey was distributed via the internet utilizing SurveyMonkey Enterprise with HIPAA compliance. Univariate regressions and frequencies were conducted between each demographic and personal characteristic and the willingness to donate. Log Binomial and linear regression was used categorical and continuous variables, and Risk ratios were calculated. RESULTS: In this large survey study, 64% of men and 50% of women reported they would be willing to donate gametes, with the majority desiring monetary compensation. Men with a high Consumer Financial Protection Bureau score were less likely to report that they would consider donating sperm compared to a medium high CFPB score. No other financial indicators were associated with considering donating sperm. There were no associations between CFPB score and egg donation outcomes. Black or African American women were less likely to consider donating their eggs compared to other groups, and more likely to desire > $5000 in compensation. CONCLUSIONS: In this large survey study, a small minority of participants reported they would be willing to donate to an unknown infertility patient for reproductive purposes. High and very high CFPB scores were associated with willingness to donate games, but not with desire for monetary compensation or amount.

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

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

New recommendations for informing patients and gamete donors in assisted reproduction.

The number of cycles of assisted reproduction using donor body parts is increasing significantly. In Europe alone, around one hundred thousand children are born each year who have some relationship to three or more parents. The European expert guarantor European Society of Human Reproduction and Embryology therefore issued a recommendation in 2022 to inform donors, recipients and children born in this way. Our article analyses developments in this area and proposes a solution for the Czech Republic. It is necessary for providers to immediately respond to the fact that the anonymity of donation can no longer be guaranteed, and to adapt the content of consultations and informed consents of potential donors and applicants accordingly. Legislation then has two possible solutions: first to adopt a system of "polyparenthoods" or second to fundamentally limit donation cycles.

An analysis of the outcome of 11 712 men applying to be sperm donors in Denmark and the USA.

STUDY QUESTION: Is the outcome of donor recruitment influenced by the country in which recruitment took place or the initial identity (ID)-release choice of applicants? SUMMARY ANSWER: More applicants are accepted as donors in Denmark than in the USA and those who choose ID release are more frequently accepted than those who do not. WHAT IS KNOWN ALREADY: The successful recruitment of sperm donors is essential to provide a range of medically assisted reproduction (MAR) procedures, which rely upon donor sperm. However, while much has been written about the medical screening and assessment of sperm donors from a safety perspective, relatively little has been written about the process of recruiting donors and how it works in practice. There are differences in demographic characteristics between donors who choose to allow their identity to be released to their donor offspring (ID release) compared to those who do not (non-ID release). These characteristics may also influence the likelihood of them being recruited. STUDY DESIGN, SIZE, DURATION: A total of 11 712 men applied to be sperm donors at a sperm bank in Denmark and the USA during 2018 and 2019. PARTICIPANTS/MATERIALS, SETTING, METHODS: Anonymized records of all donor applicants were examined to assess the number passing through (or lost) at each stage of the recruitment process. Statistical analysis was carried out to examine differences between location (Denmark or USA) and/or donor type (ID release versus non-ID release). MAIN RESULTS AND THE ROLE OF CHANCE: Few applicants (3.79%) were accepted as donors and had samples frozen and released for use; this was higher in Denmark (6.53%) than in the USA (1.03%) (χ2 = 243.2; 1 degree of freedom (df); z = 15.60; P < 0.0001) and was higher in donors who opted at the outset to be ID release (4.70%) compared to those who did not (3.15%) (χ2 = 18.51; 1 df; z = 4.303; P < 0.0001). Most candidate donors were lost during recruitment because they: withdrew, failed to respond, did not attend an appointment, or did not return a questionnaire (54.91%); reported a disqualifying health issue or failed a screening test (17.41%); did not meet the eligibility criteria at the outset (11.71%); or did not have >5 × 106 motile sperm/ml in their post-thaw samples (11.20%). At each stage, there were statistically significant differences between countries and the donor's initial ID choice. During recruitment, some donors decided to change ID type. There were no country differences in the frequency in which this occurred (χ2 = 0.2852; 1 df; z = 0.5340; P = 0.5933), but it was more common for donors to change from non-ID release to ID release (27.19%) than the other way around (11.45%) (χ2 = 17.75; 1 df; z = 4.213; P < 0.0001), although movements in both directions did occur in both countries. LIMITATIONS, REASONS FOR CAUTION: No information was available about the demographic characteristics of the applicants, which may also have influenced their chances of being accepted as a donor (e.g. ethnicity and age). Donor recruitment procedures may differ in other locations according to local laws or guidelines. WIDER IMPLICATIONS OF THE FINDINGS: A better understanding of when and why candidate donors are lost in the recruitment process may help develop leaner and more efficient pathways for interested donors and sperm banks. This could ultimately increase the number of donors recruited (through enhanced information, support, and reassurance during the recruitment process) or it may reduce the financial cost to the recipients of donor sperm, thus making it more affordable to those who are ineligible for state-funded treatment. STUDY FUNDING/COMPETING INTEREST(S): The study received no funding from external sources. All authors are Cryos employees or members of the Cryos External Scientific Advisory Committee. TRIAL REGISTRATION NUMBER: N/A.

Early pregnancy outcomes of IVF cycles using donor versus partner sperm: analysis of 1 376 454 cycles recorded by the Human Fertilisation and Embryology Authority (1991-2016).

STUDY QUESTION: Are the early pregnancy outcomes of IVF pregnancies conceived with donor sperm different to those conceived with partner sperm? SUMMARY ANSWER: Pregnancies conceived with donor sperm have a lower odds of early pregnancy loss and ectopic pregnancy compared to pregnancies conceived with partner sperm. WHAT IS KNOWN ALREADY: The number of cycles using donor sperm has risen significantly in recent years. Adverse early pregnancy outcomes have a negative impact on women and their partners. The evidence available to date regarding early pregnancy outcomes for pregnancies conceived with IVF donor sperm is limited by low numbers and lower-quality studies. STUDY DESIGN, SIZE, DURATION: This is a retrospective cohort study of 1 376 454 cycles conceived with either donor or partner sperm between 1991 and 2016 as recorded in the Human Fertilisation and Embryology Authority (HFEA) Register. PARTICIPANTS/MATERIALS, SETTING, METHODS: The HFEA has recorded data on all fertility treatments carried out in the UK from 1991 onwards, and it publishes this data in an anonymized form. This study assessed the outcomes of all pregnancies conceived with donor sperm and compared them to those conceived with partner sperm among IVF cycles recorded in the HFEA anonymized dataset from 1991 to 2016. Cycles that included intrauterine insemination, donor oocytes, preimplantation genetic testing, oocyte thaw cycles and alternative fertility treatments were excluded. The outcomes of interest were biochemical pregnancy, miscarriage, ectopic pregnancy, stillbirth and live birth. Logistic regression was used to adjust for confounding factors including age of the female partner, cause of infertility, history of previous pregnancy, fresh or frozen cycle, IVF or ICSI, number of embryos transferred, and year of treatment. Results are reported as adjusted odds ratios (aOR) and 95% CIs. MAIN RESULTS AND THE ROLE OF CHANCE: This study found reductions in the odds of biochemical pregnancy (aOR 0.82, 95% CI 0.78-0.86), miscarriage (aOR 0.93, 95% CI 0.89-0.97), and ectopic pregnancy (aOR 0.77, 95% CI 0.66-0.90) among pregnancies as a result of the use of donor sperm as opposed to partner sperm. LIMITATIONS, REASONS FOR CAUTION: This study is retrospective and limited by the constraints of routinely collected data. No data were available for maternal characteristics such as BMI, smoking and partner age, which could all be potential confounders. Clustering of multiple pregnancies within women could not be accounted for as the data are reported only at the cycle level with no maternal identifiers. WIDER IMPLICATIONS OF THE FINDINGS: This study has demonstrated that there are no increased risks of adverse pregnancy outcome with donor sperm pregnancies. The reduction in miscarriage in pregnancies using donor sperm suggests that sperm could have a role in miscarriage, as the selection process for being accepted as donor is stringent. STUDY FUNDING/COMPETING INTEREST(S): No external funding was sought for this study. C.A. has received funding from Ferring to attend a UK meeting for trainees in reproductive Medicine. A.M. has received funding from Ferring, Cook, Merck Serono, Geodon Ritcher, and Pharmasure for speaking at, or attending, meetings relating to reproductive medicine. She has also participated in a Ferring advisory board. S.B. has received grants from Tenovus and the UK Medical Research Council. She has also been supported with a Medical Research Scotland PhD studentship. TRIAL REGISTRATION NUMBER: N/A.

Families created via identity-release egg donation: disclosure and an exploration of donor threat in early childhood.

RESEARCH QUESTION: What are mothers' disclosure intentions and practices from infancy to early childhood, and is perceived donor threat associated with disclosure in identity-release egg donation families when the children are aged 5 years? DESIGN: This longitudinal study included 73 heterosexual-couple families with infants born following IVF-egg donation at phase one, and 61 families with 5-year-old children at phase two. At both phases, mothers were interviewed about their disclosure intentions and practices. At phase two, mothers were interviewed about their feelings about future donor-child contact. RESULTS: Most mothers (75.3%) intended to disclose their use of egg donation to their children at phase one; half had begun to do so when their children were aged 5. Most remaining mothers planned to tell, although a minority were uncertain or planned not to disclose. When the child was aged 5, four mothers had started telling them that they could access their donor's identifying information at age 18, and most (84%) intended to do so in the future. Most couples agreed on a disclosure strategy at phase two. Most mothers perceived at least some threat from future donor-child contact, but this was unrelated to their disclosure practices. CONCLUSIONS: Disclosure intentions in infancy are borne out in early childhood. Despite perceiving some threat from future donor-child contact, most mothers intended telling their child that they could access the donor's identifying information at age 18. Revisiting these families as the children grow older will be important to understand how the mothers' perceived donor threat may change over time, and how this is related to family processes.

[Etiology of preeclampsia after assisted reproductive treatments]. / Étiologie de la prééclampsie après traitements de procréation médicalement assistée.

About 12 percent of women require assisted reproductive technology (ART) to get pregnant as infertility concerns more and more couples. Recent studies highlight obstetrical complications after ART such as preeclampsia, gestational diabetes or placenta accrete spectrum. Pre-eclampsia is a specific pathology of the pregnancy which can lead to materno-fetal complications including prematurity and intrauterine growth restriction. The aim of this article is to summarize preeclampsia risk factors during ART. We performed a narrative review based on articles published since 2010. Preeclampsia rate is increased after frozen embryo transfer, especially in case of artificial cycle, multiple pregnancies and gamete donation.

Environ 12 % des femmes dans le monde auront recours aux techniques de procréation médicalement assistée (PMA) pour concevoir. L'infertilité concerne de plus en plus de couples. Des études récentes mettent en évidence des complications obstétricales après la PMA telles que la prééclampsie, le diabète gestationnel et le spectre des placenta accreta. La prééclampsie est une pathologie spécifique de la grossesse qui peut entraîner des complications materno-fœtales, notamment la prématurité et le retard de croissance intra-utérin. L'objectif de cet article est de résumer les facteurs de risque de la prééclampsie liés à la PMA. Nous avons réalisé une revue narrative basée sur les articles publiés depuis 2010. Le taux de prééclampsie est augmenté après les transferts d'embryons congelés, en particulier en cas de cycle artificiel, de grossesses multiples, de don de gamètes et d'hyperstimulation ovarienne.

[Access to origins for persons conceived by donation in France]. / L'accès aux origines pour les personnes conçues par don en France.

It was a strong and long-standing demand of people born of gamete donation: to know who is the person who allowed them to come into the world. The French legislator seemed to take this need into account during the last revision of the bioethics law. But if the rules have already changed for donors, for whom anonymity becomes fixed-term, for individuals born from a donation, access to their origins is far from being guaranteed to this day.

Balancing embryo donation and double gamete donation.

Huele and colleagues started a debate on the comparison between embryo donation and double donation. Although I largely agree with their final conclusion, I believe that the perspective of the recipients needs to be added to get a more complete picture. The present contribution focuses on that perspective and advances other arguments to balance the two methods. The main argument in favour of double donation is the difference in perceived meaning for the recipients compared to surplus embryos. The main arguments in favour of embryo donation are the fair distribution of scarce resources (i.e. donor gametes) and the principle of non-maleficence through the avoidance of unnecessary oocyte donation cycles. The balance would be to put both treatments on an equal footing.

Sperm sharing: as problematic as oocyte sharing?

Sperm sharing has recently been introduced in a number of clinics in the UK. In all gamete sharing schemes, two goals can be distinguished: increasing the donor pool and enabling less affluent patients to access IVF treatment. This article compares sperm sharing with oocyte sharing in order to determine whether the differences and similarities affect the moral acceptability of the practice. It then compares sperm sharers with regular sperm donors and notices that sperm sharers seem to have fewer rights than regular sperm donors. The next step is to look at the alternatives to reach the two goals of sharing schemes. Regarding the first goal of increasing the donor pool, there are alternative procedures that are minimally coercive and where less affluent people are not targeted. Regarding the goal of increasing access to IVF treatment, clinics could propose cheaper IVF protocols to less affluent people or offer the IVF cycle at reduced prices. I conclude that the ethical problems caused by sharing schemes that offer financial benefits in return for oocytes or sperm can be avoided by using alternatives.

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

STUDY QUESTION: What are the experiences of same-sex mothers following identity-release sperm donation regarding equal treatment in society, parenting stress and disclosure to child? SUMMARY ANSWER: 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. WHAT IS KNOWN ALREADY: 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. STUDY DESIGN, SIZE, DURATION: 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. PARTICIPANTS/MATERIALS, SETTING, METHODS: 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. MAIN RESULTS AND ROLE OF CHANCE: 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. LIMITATIONS, REASONS FOR CAUTION: 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. WIDER IMPLICATION OF THE FINDINGS: 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. STUDY FUNDING/COMPETING INTEREST(S): 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. TRIAL REGISTRATION NUMBER: N/A.

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.

GENType: all-in-one preimplantation genetic testing by pedigree haplotyping and copy number profiling suitable for third-party reproduction.

STUDY QUESTION: Is it possible to develop a comprehensive pipeline for all-in-one preimplantation genetic testing (PGT), also suitable for parents-only haplotyping and, for the first time, third-party reproduction? SUMMARY ANSWER: Optimized reduced representation sequencing (RRS) by GENType, along with a novel analysis platform (Hopla), enables cheap, accurate and comprehensive PGT of blastocysts, even without the inclusion of additional family members or both biological parents for genome-wide embryo haplotyping. WHAT IS KNOWN ALREADY: Several haplotyping strategies have proven to be effective for comprehensive PGT. However, these methods often rely on microarray technology, whole-genome sequencing (WGS) or a combination of strategies, hindering sample throughput and cost-efficiency. Moreover, existing tools (including other RRS-based strategies) require both prospective biological parents for embryo haplotyping, impeding application in a third-party reproduction setting. STUDY DESIGN, SIZE, DURATION: This study included a total of 257 samples. Preliminary technical validation was performed on 81 samples handpicked from commercially available cell lines. Subsequently, a clinical validation was performed on a total of 72 trophectoderm biopsies from 24 blastocysts, tested for a monogenic disorder (PGT-M) (n = 15) and/or (sub)chromosomal aneuploidy (PGT-SR/PGT-A) (n = 9). Once validated, our pipeline was implemented in a diagnostic setting on 104 blastocysts for comprehensive PGT. PARTICIPANTS/MATERIALS, SETTING, METHODS: Samples were whole-genome amplified (WGA) and processed by GENType. Quality metrics, genome-wide haplotypes, b-allele frequencies (BAFs) and copy number profiles were generated by Hopla. PGT-M results were deduced from relative haplotypes, while PGT-SR/PGT-A results were inferred from read-count analysis and BAF profiles. Parents-only haplotyping was assessed by excluding additional family members from analysis and using an independently diagnosed embryo as phasing reference. Suitability for third-party reproduction through single-parent haplotyping was evaluated by excluding one biological parent from analysis. Results were validated against reference PGT methods. MAIN RESULTS AND THE ROLE OF CHANCE: Genome-wide haplotypes of single cells were highly accurate (mean > 99%) compared to bulk DNA. Unbalanced chromosomal abnormalities (>5 Mb) were detected by GENType. For both PGT-M as well as PGT-SR/PGT-A, our technology demonstrated 100% concordance with reference PGT methods for diverse WGA methods. Equally, for parents-only haplotyping and single-parent haplotyping (of autosomal dominant disorders and X-linked disorders), PGT-M results were fully concordant. Furthermore, the origin of trisomies in PGT-M embryos was correctly deciphered by Hopla. LIMITATIONS, REASONS FOR CAUTION: Intrinsic to linkage-analysis strategies, de novo single-nucleotide variants remain elusive. Moreover, parents-only haplotyping is not a stand-alone approach and requires prior diagnosis of at least one reference embryo by an independent technology (i.e. direct mutation analysis) for haplotype phasing. Using a haplotyping approach, the presence of a homologous recombination site across the chromosome is biologically required to distinguish meiotic II errors from mitotic errors during trisomy origin investigation. WIDER IMPLICATIONS OF THE FINDINGS: We offer a generic, fully automatable and accurate pipeline for PGT-M, PGT-A and PGT-SR as well as trisomy origin investigation without the need for personalized assays, microarray technology or WGS. The unique ability to perform single-parent assisted haplotyping of embryos paves the way for cost-effective PGT in a third-party reproduction setting. STUDY FUNDING/COMPETING INTEREST(S): L.D.W. is supported by the Research Foundation Flanders (FWO; 1S74619N). L.R. and B.M. are funded by Ghent University and M.B., S.S., K.T., F.V.M. and A.D. are supported by Ghent University Hospital. Research in the N.C. lab was funded by Ghent University, VIB and Kom op Tegen Kanker. A.D.K and N.C. are co-inventors of patent WO2017162754A1. The other authors have no conflicts of interest. 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 QUESTION: Is 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? DESIGN: This 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. RESULTS: About 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. CONCLUSIONS: Overall, 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.

The child's best interest in gamete donation.

Procreation with donor gametes is widespread and commonly accepted, but it involves ethical questions about the child's best interest. Understanding the historical structures of the moral discussion of gamete donation may contribute to reflecting on the child's best interest. This is why I have analysed the debate on gamete donation in the Netherlands, and this analysis has uncovered some striking discontinuities. Notions of the child's best interest have undergone a radical swing. In the past, it was considered acceptable to conceal the truth about the child's biological origin, but in the past two decades the general opinion has changed to the common belief that this information should be shared with the child. This changed notion of the child's best interest will be analysed using a framework encompassing three views of the child, which derive from the debate on children's rights. These three views each provide a different interpretation of the child's moral and political status. I conclude that the changed notion of the child's best interest results from a view of the child that focuses on autonomy and citizenship, and which frames the child's interests according to its legal status. I comment on this view and I champion an alternative one, namely 'the embedded child'. This is a relational view based on care ethics that goes beyond what can be articulated in law, and that will help to establish a more balanced interpretation of the child's best interest at the practice and policy levels of gamete donation.