Good practice recommendations for information provision for those involved in reproductive donation†

Abstract

STUDY QUESTION What information and support should be offered to donors, intended parents and donor-conceived people, in general and in consideration of the availability of direct-to-consumer genetic testing and matching services? SUMMARY ANSWER For donors, intended parents and donor-conceived offspring, recommendations are made that cover information needs and informed consent, psychosocial implications and disclosure. WHAT IS KNOWN ALREADY Trends indicate that the use of donor-assisted conception is growing and guidance is needed to help these recipients/intended parents, the donors and offspring, navigate the rapidly changing environment in which donor-assisted conception takes place. STUDY DESIGN, SIZE, DURATION A working group (WG) collaborated on writing recommendations based, where available, on evidence collected from a literature search and expert opinion. Draft recommendations were published for stakeholder review and adapted where relevant based on the comments received. PARTICIPANTS/MATERIALS, SETTING, METHODS Papers retrieved from PUBMED were included from 1 January 2014 up to 31 August 2020, focusing on studies published since direct-to-consumer genetic testing has become more widespread and accessible. The current paper is limited to reproductive donation performed in medically assisted reproduction (MAR) centres (and gamete banks): donation outside the medical context was not considered. MAIN RESULTS AND THE ROLE OF CHANCE In total, 32 recommendations were made for information provision and support to donors, 32 for intended parents and 27 for donor-conceived offspring requesting information/support. LIMITATIONS, REASONS FOR CAUTION The available evidence in the area of reproductive donation is limited and diverse with regards to the context and types of donation. General conclusions and recommendations are largely based on expert opinion and may need to be adapted in light of future research. WIDER IMPLICATIONS OF THE FINDINGS These recommendations provide guidance to MAR centres and gamete banks on good practice in information provision and support but should also be considered by regulatory bodies and policymakers at a national and international level to guide regulatory and legislative efforts towards the protection of donors and donor-conceived offspring. STUDY FUNDING/COMPETING INTEREST(S) The development of this good practice paper was funded by European Society of Human Reproduction and Embryology (ESHRE), covering expenses associated with the WG meetings, the literature searches and dissemination. The WG members did not receive any payment. The authors have no conflicts of interest to declare. DISCLAIMER This document represents the views of ESHRE, which are the result of consensus between the relev...

The experience of counselling for UK egg providers

“…Our findings indicate that there are some aspects of counselling in the UK that could be improved in line with good practice guidelines, such as those published by BICA (BICA, 2019) and, more recently, by ESHRE (ESHRE Working Group on Reproductive Donation et al, 2022). Such guidelines highlight the importance of counselling in order to ensure that egg donors are well‐informed about the fast‐changing environment of donor‐assisted conception and its implications.…”

“…Alternatively, UK donors can opt into a “known” arrangement, where recipients and donors are already known to one another at the point of treatment, with the assumed implication that any offspring will have direct access to information about the donor before the age of 18. More recently, the emergence of direct‐to‐consumer genetic testing has called into question the ability of donors to remain anonymous at all (ESHRE Working Group on Reproductive Donation et al, 2022).…”

Adult offspring of lesbian parents reflect on having been donor conceived: Feelings about their sperm donor and donor siblings.

“…Clinicians should be prepared to discuss issues of donor anonymity and self-disclosure to children, as well as other concerns that parents and offspring may have. Guidelines for clinicians in counseling gamete donors, recipients and DI offspring are detailed by the Ethics Committee of the American Society for Reproductive Medicine (Daar et al, 2018) and the European Society of Human Reproduction and Embryology Working Group on Reproductive Donation (ESHRE Working Group on Reproductive Donation et al, 2022). Both organizations strongly encourage openness about DI and sharing information with offspring about their sperm donors.…”

Who's your daddy? An ethical argument for disclosure to donor conceived children

“…11 but it is only within the last decade that it has gained support from professional medical societies like the ASRM and the European Society for Human Reproduction and Embryology. 12 In contrast to traditional concerns that disclosure would be detrimental to donor conceived children and to family dynamics, the quality of family relationships and children's psychological well-being is comparable for donor conceived children and naturally conceived children. 13 Mirroring adoption studies, studies with donor conceived children show that they generally respond positively to disclosure, especially when told that a younger age.…”

“…Disclosure about children's genetic origins has long been the standard practice for adoption 11 . but it is only within the last decade that it has gained support from professional medical societies like the ASRM and the European Society for Human Reproduction and Embryology 12 . In contrast to traditional concerns that disclosure would be detrimental to donor conceived children and to family dynamics, the quality of family relationships and children's psychological well‐being is comparable for donor conceived children and naturally conceived children 13 .…”