P–477 The child’s right to know vs. the parents’ right not to tell: the attitudes of couples undergoing fertility treatments towards identity-release gamete donation

Study question Do couples undergoing assisted reproduction treatments (ART) have a different perception of anonymous vs identity-release gamete donation than a population interested in the subject? Summary answer Compared with a population interested in the subject, more couples undergoing ART believed the child shouldn’t be given information that would identify the gamete-donor. What is known already Recent research has investigated the psychological well-being of parents and children born through gamete donation, focusing on the possibility of having the donor’s identity revealed. Gamete donors have traditionally been anonymous to recipients and offspring; however, there is a global trend towards programs using donors that are identifiable to the resulting offspring at maturity. While some countries only allow the use of identity-release egg donation, others only allow anonymous-donation, and in some countries both types of donation are practiced. However, the attitudes concerning anonymous vs identity-release gamete donation, in a country where only anonymous donation is allowed, are still unknown. Study design, size, duration This cross-sectional study was performed from 01/Sep/2020 to 15/Dec/2020. For that, surveys through online-platforms were conducted, including either patients undergoing ART, (ART-group, n = 358) or those interested in the subject, who accessed the website of a university-affiliated IVF-center (interested-group, n = 122). Participants in the ART-group were invited via e-mail, with a cover-letter outlining the survey and a link to access it and participants in the interested-group accessed the questionnaire via website. Participants/materials, setting, methods The survey collected information on demographic characteristics and the participant’s attitudes towards anonymity of gamete donors. The questions were: (i) In the case of children conceived through ART, do you believe that revealing the method of conception may affect the relationship between children and their parents? (ii) Once the method of conception is revealed, do you believe that the child has the right to know the gamete donor? (iii) If yes, when? Main results and the role of chance Most of the participants answered that the relationship between children and parents wouldn’t be affected by the child’s knowledge of the origin of their conception, regardless of the group (83.6% vs 82.7%, for ART-group and interested-group, respectively, p = 0.868). Most participants in the ART-group answered that the sperm donor identity shouldn’t be revealed to the child, while only half of the interested-group stated the same (65.4% vs 50.8%, p = 0.044). The same result was observed when participants were asked if the oocyte donor should be identifiable (64.8% vs 50.8%, p = 0.050). When asked when the donor’s identity should be revealed to the child, no significant differences were noted in the responses among the groups (p = 0.868). Most of the participants who believe that the child has the right of learning the donor’s identity, stated that “the donor’s identity should be revealed if the child questions its biological origin” (67.2% vs 67.5%, for ART-group and interested-group, respectively). “Since birth” was the second most common response, (21.0% vs 19.7%, for ART-group and interested-group, respectively), while “when the child turns 18 years-old” (9.2% vs 11.2%, for ART-group and interested-group, respectively), and “sometime during teenage years” (2.5% vs 2.4%, for ART-group and interested-group, respectively) were less common answers. Limitations, reasons for caution Lack of adequate opportunities to conduct face to face interview and lack of knowledge of the real state of the website participants, concerning infertility or being involved in ART. The retrospective nature of the study and the small sample size may also be reasons for caution, Wider implications of the findings: It has been discussed that, whether or not children or parents are harmed by knowing their biological origins, donor offspring have the right to know. However, when facing the situation, couples undergoing ART would argue that in case of gamete donation, there are reasons for not telling the child. Trial registration number Not applicable

Fragile X Syndrome Secondary to in Vitro Fertilization with a Family Egg Donor, A Case Report and Review of the Literature

Objective: To evidence the need for screening fragile X syndrome (FXS) in egg donors in assisted reproduction protocols. Case report: This is the report of a boy with FXS who inherited the mutated allele from an ovule donated by the mother´s sister through an assisted reproduction protocol. Identifying premutation (PM) carriers of FXS amongst gamete donors isn’t part of the obligatory genetic analysis for donors and is only considered by most of the in vitro fertility societies and guidelines as part of the extension screening tests. Conclusion: It is cost-effective to do pre-conceptional screening for the PM or full mutation (FM) of the FMR1 gene affected in FXS in every woman undergoing assisted reproductive methods, including gamete donors even without a positive family history of intellectual disabilities. This case supports the need of rethinking the guidelines on the necessary gamete donor screening tests in assisted reproduction protocols.

The Scope of Donor-Conceived Person’s Right to Access Information about the Gamete Donor in Europe – A Comparative Review

Legal regulations concerning infertility treatment differ among European jurisdictions. Broadly speaking, three types of gamete donation are distinguished – anonymous donation, identifiable donation, and known donation. However, using only these terms during a debate on international standard of gamete donation is a significant simplification. Even in those jurisdictions in which the same model of gamete donation occurs, the scope of information about a donor that is accessible for a child differs. Moreover, in some jurisdictions, the law permits donors and recipients to choose between two or more types of gamete donation. This paper therefore analyses the extent to which the donor’s data is accessible to a donor-conceived person within these different regimes. It argues that a balanced international standard for data exchange concerning gamete donation could be acceptable for all European countries. This paper concludes that it would be a positive first step to harmonise legal framework of gamete donation in Europe to reach a position that would be acceptable for countries in which donor’s anonymity is protected, as well as in countries in which the donor’s identity is always open for a donor conceived-person.

Whose Child is This? The Problem of Constructing and Deconstructing Kinship Bonds on the Donor Gamete Market

Invention and subsequent development of human reproduction technologies allow people to manage reproductive risks, overcome infertility and widen alternative reproductive choice. Medicine has given men and women the access to programmes of saving biogenetic material, DNA-tests for identifying paternity and services for creating a genetic passport which identifies potential diseases and genetic peculiarities. However, assisted reproductive technologies, such as donorship of sex sells and surrogate motherhood, are violating the familiar integrity of reproductive process and changing the usual perception of kinship as sharing of biological substance. A distinguishing feature of the market for gamete donation and surrogate motherhood lies in the importance of both construction and deconstruction of kinship between donors, recipients of reproductive goods and services and a baby, who is born with the help of the ART methods (assisted reproductive technologies).Basing on the results of sociological research of donor sex sells market, the author of the article shows us how members of reproductive business coordinate different parts of their work (technical, emotional, legal, financial etc.), in order to solve the controversial problem of defining kinship between the participants of the donor programmes. On the one hand, medical specialists and representatives of reproductive agencies take part in destroying the kinship between a gamete donor and a baby, and on the other hand, they participate in creating and supporting kin ties between parents received donor sex sells and a baby, who doesn’t have common gens with them. Empirical study base consists of expert interviews with the employees of medical clinics and reproductive agencies in Moscow and Saint Petersburg.

Ethical problems with ethnic matching in gamete donation

Assisted reproduction using donor gametes is a procedure that allows those who are unable to produce their own gametes to achieve gestational parenthood. Where conception is achieved using donor sperm, the child lacks a genetic link to the intended father. Where it is achieved using a donor egg, the child lacks a genetic link to the intended mother. To address this lack of genetic kinship, some fertility clinics engage in the practice of matching the ethnicity of the gamete donor to that of the recipient parent. The intended result is for the child to have the phenotypic characteristics of the recipient parents. This paper examines the philosophical and ethical problems raised by the policy of ethnic matching in gamete donation. I consider arguments for the provision of ethnic matching based on maximising physical resemblance and fostering ethnic identity development. I then consider an argument against ethnic matching based on the charge of racialism. I conclude that while the practice of ethnic matching in gamete donation could promote positive ethnic identity development in donor-conceived children from historically subjugated ethnic minorities, it also risks endorsing the problematic societal attitudes and assumptions regarding ethnicity that enabled such subjugation in the first place.