Survey of fertility counselling provision in UK licensed treatment centres during the first phase of the COVID-19 pandemic.

A survey of UK fertility counsellors' experiences of the impact on their service, including its availability, during the first phase of the COVID-19 pandemic in the spring of 2020 received 64 responses. Fifty three respondents had continued to provide a service. Forty now worked from a wholly/substantially different location to normal but many clinics provided no practical support for this (n = 17), or remote access to relevant clinic (n = 17) or client information (n = 12) and twenty five respondents reported reduced multi-disciplinary involvement. Few received regular information updates. Some whose service was stopped (n = 11) abruptly lost income and/or were unsure whether they could or would resume working. Increased remote counselling proved crucial for accessibility and could be effective. Concerns included fatigue, technical and practical challenges, confidentiality, lowered therapeutic effectiveness. Respondents supported patients having choice over how to receive counselling in the future but a third (n = 21) had not been included in such planning. These findings suggest the need for increased involvement and support of fertility counsellors in the event of a future waves, other pandemic or healthcare crisis. More needs to be understood about why clinic responses varied; how to improve the safety and efficacy of remote counselling; and how to accommodate future needs for face-to-face contact.

Counselling challenges associated with donor conception and surrogacy treatments - time for debate.

Fertility counselling services have had to respond to significant developments in fertility treatments in recent years, prompting increasingly complex personal and professional ethical challenges. This Commentary focuses on those rising from donor conception and/or surrogacy. The profile of those seeking such treatments has changed to include growing numbers of same sex couples, single people, people who are transitioning or have done, people seeking posthumous use of gametes, and people using cross-border services. Alongside, awareness has grown of life-span implications, the impact of commercial DNA testing, and the need for 'later-life' support. Responses vary internationally and the time for debate is overdue. Who should provide fertility counselling and how? Should specialist qualifications, training, continuing professional development, and regulation be required? Should counsellors play a role in assessing suitability to parents? What aspects of different contractual arrangements and conflicts of interest need attention? Has the time come for counselling to be mandatory as part of pre-treatment pathways? What should be the relationship between fertility counsellors and multi-disciplinary clinic teams? How might fertility counsellors be represented nationally and internationally? What should be their relationship to 'later life' professional support? What place should professional knowledge hold in the evidence base?

Co-designing genomics research with a large group of donor-conceived siblings.

BACKGROUND: Human genomics research is growing rapidly. More effective methods are required for co-design and involving people, especially those sub-populations which are inherently high interest to medical research and thus at greater risk of being exploited. This case study documents how we worked with a large group of donor-conceived siblings who share the same sperm donor father, to explore how they might want to engage with and influence any future genomic research. METHOD: A participatory action research process was used to explore the views of a group of 18 people who knew they are donor-conceived siblings. They are part of a larger group of up to 1000 people who share the same sperm donor father but the only ones in contact with each other; it is likely that many of the uncontacted siblings are unaware of their biological father, have been unable to trace others or have died. The discussion explored views about how the group would like to be involved in future research. Five members participated in co-design; 12 completed a pre-discussion online survey; and six participated in an online discussion forum and evaluation survey. The online discussion was led by one facilitator, supported by the study team. RESULTS: Of the 18 siblings approached in 2018, 14 participated in the co-design stages or the surveys and online discussion. Co-design informed the research process. Participants reported enjoying the overall experience of the surveys and discussion forum, which were perceived as inclusive and flexible. Most participants' views regarding the value of involvement in research changed during the process, and 'widened' about who should be involved. Participants were supportive of future research being done with the siblings group. All who completed the final survey requested to remain part of the co-design process. Other themes in the online discussion included concerns about conflicting interests and a desire for research participation to improve the situation for people affected by assisted conception. The process informed later discussions in the sibling group about participating in a self-managed biobank and informed decision making about participating in genomics research. CONCLUSION: Findings from this study help inform ways in which people from certain sub-populations can be involved in planning and defining their participation in genomic research, particularly those that are inherently high interest to medical research and thus at greater risk of exploitation. This process provides a replicable method of involving potential participants in co-designing genomics research using online discussions, with positive outcomes. Reporting this study using 'Standardised data on initiatives (STARDIT)' to report the process allows comparison with other studies.

Human genomics research is growing rapidly. There is evidence that involving potential participants and the public in co-designing research can improve the quality, recruitment and acceptability of the research. However, more evidence about effective methods for involving people is required, especially those in sub-populations who are inherently high interest to researchers and thus with a higher risk of being exploited by medical researchers. In this study, we worked with a large group of donor-conceived siblings who were conceived from the same sperm donor. We sought their views regarding participation in possible future research. We co-designed a way of involving them in discussion about their own "terms of engagement" with research. Online discussions gave group members an opportunity to share their views, and take initial steps towards developing their own research governance model. We used the 'Standardised Data on Initiatives (STARDIT)' Alpha Version to report involvement, allowing findings to be compared with other studies. Group members who participated reported enjoying the experience and identified some advantages to online discussions over other methods, including time to reflect on answers and learn collectively. Most participants' preferences about who should be involved in research design 'widened' to include more people. Participants' learning from the process also informed subsequent discussions in the sibling group about participation in research, including about how to make informed decisions about participating. Involving people in this way has the potential for a 'transformative learning' impact, where people's perspectives and attitudes change as a result of being involved. This is particularly important for people in populations at greater risk of being exploited including under-represented sub-populations who are of high interest to genomic researchers.

Secrets and disclosure in donor conception.

This article considers the disclosure, sharing and exchange of information on being donor conceived within families, drawing on data from a study undertaken with donor-conceived adults registered with UK Donor Link (a voluntary DNA-linking register). This paper considers the narratives of how respondents found out they were donor-conceived and what events triggered disclosure of this information. This paper then goes on to examine the role secrecy played in their family life and uses the concept of 'display' to explore how secrecy affected their relationships with their immediate and extended family. Secrets are notoriously 'leaky' and we found complex patterns of knowing and uncertainty about whom in the family knew that the person was donor-conceived. We argue that what is kept secret and from whom provides insights into the multifaceted web of social relationships that can be created by donor-conception, and how knowledge can be managed and controlled in attempts to display and maintain family narratives of biogenetic connection.

Direct-to-consumer DNA testing: the fallout for individuals and their families unexpectedly learning of their donor conception origins.

Increasing numbers of donor-conceived individuals (and/or parents) are seeking individuals genetically related through donor conception. One route is through 'direct-to-consumer' (DTC) DNA testing, prompting calls for fertility services to alert donors and prospective parents to the increasing unsustainability of anonymity and secrecy. The complexity of interpreting DNA results in this context has also been discussed, including their lack of absolute certainty, as has the need for professional and peer support. This commentary highlights a different 'threat', from individuals learning of their donor-conception origins through the use of such tests by themselves or relatives for such purposes as genealogy or health checks. It illustrates the personal complexities faced by three older women and their families on learning not only of their genetic relationship to each other but also to 15 more donor-related siblings. DTC DNA services are a growing feature of modern life. This commentary raises ethical questions about their responsibilities towards those inadvertently learning of donor conception origins and the responsibilities of fertility services to inform prospective parents and donors of this new phenomenon. Considerations of how and when parents should tell their children of their donor-conception origins here instead become how and when children should inform their parents.

Gamete donors' reasons for, and expectations and experiences of, registration with a voluntary donor linking register.

This paper reports on a study of the views and experiences of 21 sperm donors and five egg donors registered with UK DonorLink (UKDL), a voluntary DNA-based contact register established to facilitate contact between adults who wish to identify and locate others to whom they are genetically related following donor conception. Specifically, the paper examines donors' reasons for searching for, or making information about themselves available to donor-conceived offspring. Their expectations of registration with UKDL, experiences of being registered and finally, the experiences of those who had contacted donor-conceived offspring and other genetic relatives are investigated. While most respondents reported largely positive experiences of registration, the study found significant issues relating to concerns about donation, DNA testing, possible linking with offspring and expectations of any relationship that might be established with offspring that have implications for support, mediation and counselling. Research that puts the experiences, perceptions and interests of gamete donors as the central focus of study is a relatively recent phenomenon. This study contributes to this debate and highlights directions for future research in this area.

Can the UK's birth registration system better serve the interests of those born following collaborative assisted reproduction?

Current birth registration systems fail to serve adequately the interests of those born as a result of gamete and embryo donation and surrogacy. In the UK, changes to the birth registration system have been piecemeal, reactive and situation-specific and no information is recorded about gamete donors. Birth registration has thereby become a statement of legal parentage and citizenship only, without debate as to whether it should serve any wider functions. This sits uneasily with the increasingly accepted human right to know one's genetic and gestational as well as legal parents, and the duty of the State to facilitate that right. This commentary sets out one possible model for reform to better ensure that those affected become aware of, and/or have access to, knowledge about their origins and that such information is stored and released effectively without compromising individual privacy. Among other features, our proposal links the birth registration system and the information stored in the Human Fertilization and Embryology Authority's Register of Information, although further work than we have been able to undertake here is necessary to ensure a better fit where cross-border treatment services or informal arrangements have been involved. The time for debate and reform is well overdue.

A survey of UK fertility clinics' approach to surrogacy arrangements.

This paper draws on the findings of the first survey of surrogacy arrangements in Human Fertilisation and Embryology Authority (HFEA) licensed fertility clinics since 1998. Given the complex social, ethical and legal issues involved, surrogacy continues to raise debate worldwide and fuel calls for increased domestic provision in developed countries. However, little is known about how recent changes have affected HFEA licensed clinics. A 24-item online survey was undertaken between August and October 2013, designed to improve understanding of recent trends and current practices associated with UK-based surrogacy, and consider the implications for future policy and practice in UK and cross-border surrogacy arrangements. The response rate was 51.4%, comprising 54 clinics. Quantitative data were analysed using descriptive statistics, and open-ended qualitative responses analysed for extending understanding. Of the participating clinics, 42.6% offered surrogacy (mostly gestational surrogacy). Heterosexual couples using gestational surrogacy were the largest group currently using services followed by male same-sex couples. Most clinics reported having encountered problems with surrogacy treatments, suggesting barriers still exist to expanding the UK provision of surrogacy arrangements. It is important that professionals are well informed about the legal implications of surrogacy and that clinics have consistent and appropriate operational protocols for surrogacy arrangements.

Evolving minimum standards in responsible international sperm donor offspring quota.

An international working group was established with the aim of making recommendations on the number of offspring for a sperm donor that should be allowable in cases of international use of his sperm. Considerations from genetic, psychosocial, operational and ethical points of view were debated. For these considerations, it was assumed that current developments in genetic testing and Internet possibilities mean that, now, all donors are potentially identifiable by their offspring, so no distinction was made between anonymous and non-anonymous donation. Genetic considerations did not lead to restrictive limits (indicating that up to 200 offspring or more per donor may be acceptable except in isolated social-minority situations). Psychosocial considerations on the other hand led to proposals of rather restrictive limits (10 families per donor or less). Operational and ethical considerations did not lead to more or less concrete limits per donor, but seemed to lie in-between those resulting from the aforementioned ways of viewing the issue. In the end, no unifying agreed figure could be reached; however the consensus was that the number should never exceed 100 families. The conclusions of the group are summarized in three recommendations.

Emerging models for facilitating contact between people genetically related through donor conception: a preliminary analysis and discussion.

Previous research indicates interest among some donor-conceived people, donors and recipient parents in having contact. Outcomes of such contact appear largely, but not universally, positive. This paper seeks to understand better the characteristics of associated support services. Information gathered using the authors' direct experiences and professional and personal networks in different parts of the world indicates the emergence of four main groupings: (i) publically funded services outside of treatment centers; (ii) services provided by fertility treatment or gamete bank services; (iii) services provided privately by independent psychosocial or legal practitioners; and (4) services organized by offspring and/or recipient parents. Key operational features examined were: (i) who can access such services and when; (ii) what professional standards and funding are in place to provide them; and (iii) how 'matching' and contact processes are managed. Differences appear influenced variously by the needs of those directly affected, local policies, national legislation and the interests of the fertility services which recruit gamete donors and/or deliver donor conception treatments. The paper is intended to inform fuller debate about how best to meet the needs of those seeking information and contact, the implications for the way that fertility treatment and gametes donation services are currently provided and future research needs.

It 'did what it said on the tin' - participant's views of the content and process of donor conception parenthood preparation workshops.

Using donor conception treatment for family building brings challenges as well as rewards. As social model approaches to managing genetic difference within families gradually replace earlier medical models, parents are encouraged to be open with their children about their origins amidst greater social acceptance. Little is known about effective interventions to help prospective parents prepare for such family life. A survey was sent to participants in 16 Preparation for Parenthood workshops run in England by Donor Conception Network, a peer support organisation, between 2008 and 2010. The 79 respondents (32.4% response) included heterosexual couples, lesbian couples and single women considering sperm, egg or double donation. In 86% couples, both partners responded. The use of a range of techniques, a family lifespan approach, facilitators with personal as well as professional experience, medical and psychosocial specialists, and access to peer support were well received. Results suggest the value of attending cognitive and affective processes, acknowledging the impact of stigma and discussing how the donor's biography/presence can be conjoined with that of the new family. Findings suggest workshop approaches to donor conception parenthood preparation can be useful for prospective lesbian/single women/heterosexual-headed families considering donor conception. Such interventions have not previously been reported.

Family building using donated gametes and embryos in the UK: recommendations for policy and practice on behalf of the British Infertility Counselling Association and the British Fertility Society in collaboration with the Association of Clinical Embryologists and the Royal College of Nurses Fertility Nurses Forum.

The UK Department of Health's consultation on the future of the Human Fertilisation and Embryology Authority (HFEA) presented an opportunity to review current practice in relation to donor conception (DC) and make recommendations for improving services to those seeking fertility treatment, to families with donor conceived children and those of donors, and to those seeking later information. The year 2023 marks the start of post-2005 donor conceived adults having statutory access to identifying information about their donor(s); some adults with pre-2005 donors will have access sooner if the donor(s) re-registers as 'willing to be identified'. This paper examines current practice in UK licensed treatment centres in collecting and disseminating donor information and in supporting donors and prospective parents. Further, it considers current HFEA functions concerning DC including its responsibilities for the Register of Information and Donor Sibling Link and its approach to policy making, regulation and the release of information from these Registers to applicants. Proposals for how these functions could be carried out in the future are set out together with recommendations for national support and intermediary services. The key evidence available to support these recommendations is outlined.

Male coping with cancer-fertility issues: putting the 'social' into biopsychosocial approaches.

Biopsychosocial approaches in infertility and cancer services and research pay limited attention to 'social dimensions'. Additionally, existing cancer-related male infertility research is dominated by sperm banking studies even though fertility-related social concerns in the long term are reported to have an adverse effect on wellbeing. This paper considers whether social influences affected the fertility-related experiences of 28 men interviewed as part of a mixed-gender qualitative study of 'South Asian' and 'White' cancer survivors and their professional carers. Findings are reported under: managing stigma; sexuality and virility; ambiguity in fertile status; relationship to sperm; and meaning of fatherhood. Gender and other social influences were ambiguous, fluid and subtle--yet powerful. Combinations were neither standard nor static, indicating the dangers of practitioners stereotyping, and/or assuming homogeneity of, (in)fertile men and being unaware of their own socialized expectations. Social structures and attitudes towards valued male social roles as well as the men's psychological capacity and bodily state appear to affect experience. Men may more readily be engaged if practitioners proactively attend to the impact of social concerns, including employment and financial matters, on their perceived capacity to be fathers as a route into raising issues of sexuality and fertility.

Working with previously anonymous gamete donors and donor-conceived adults: recent practice experiences of running the DNA-based voluntary information exchange and contact register, UK DonorLink.

This article describes recent practice experiences with donor conceived adults, donors, non-donor-conceived adult children of donors using the voluntary DNA-based register, UK DonorLink. It highlights additional complexities faced when using DNA rather than paper records for searching, in particular from the risk of false positives, low chances of success and potential inclusion of biological parents' DNA. Professionals' experiences in supporting those being "linked" suggest challenges as well as rewards. Registration carries the potential to be therapeutic for donor-conceived adults and donors and to enhance their political awareness regardless of links being made. Registrants value both peer and professional support, providing the latter can respond flexibly and be delivered by staff experienced in intermediary work. Given that the majority of those affected by donor conception internationally come from anonymous donation systems, these findings are highly pertinent and argue the need for political and moral debate about such service provision.

Psychosocial oncofertility issues faced by adolescents and young adults over their lifetime: a review of the research.

This review considers psychosocial oncofertility research relevant to adolescents and young adults over their lifetime. There is growing awareness of the fertility preservation needs of younger males including lowering practical barriers and attending to emotional impact. Despite decisional challenges facing females--the experimental nature of procedures, time involved and potential involvement of partners/donors (for embryo cryopreservation)--findings suggest they too benefit from fertility information at diagnosis and access to fertility specialists. Studies consistently report that fertility concerns affect well-being, relationships and life planning. Both genders thus want fertility issues to be raised proactively by professionals in the years following diagnosis: to help them make informed decisions at a time relevant to them, develop coping strategies for current and future related areas and to be referred to specialist and/or therapeutic help if needed. Little is known about why cancer survivors are less likely to marry or have children, or about their parenthood experiences.

Donor-conceived people's views and experiences of their genetic origins: a critical analysis of the research evidence.

This article reports on a systematic review of English language, peer-reviewed publications from 13 empirical studies with donor-conceived children and adults regarding their experiences and perceptions of donor conception. A total of 19 articles that met the inclusion criteria were reviewed. These were identified by means of a bibliographic search of four electronic databases for the period 1990-2011 and supplemented by the authors' personal knowledge of work in this field. No reports from such studies appeared prior to 2000, and more than half have been published since 2008, demonstrating the relative novelty of research in this field. Much of the reviewed research evidence concerns individuals conceived through sperm donation conducted under a regime promoting both anonymity and nondisclosure. Consequently, there is little research that pertains to individuals conceived through other forms of collaborative reproduction, nor to those conceived under arrangements and regimes in which early parental disclosure is both advocated and practised and the identity of the donor and of other genetic relatives may be accessible to donor-conceived individuals. The studies consistently report that most donor-conceived people have an interest in securing information about their genetic and biographical heritage - more information than most of them have been able to obtain. Although a number of methodological limitations in the research base are identified, the authors conclude that the evidence is sufficiently robust to promote the implementation of policies and practices that promote transparency and openness in collaborative reproduction, thus reflecting the importance of maximising future choices and opportunities for donor-conceived people.

Producing sperm, egg and embryo donors' pen portraits and other personal information for later use by donor offspring: an exploratory study of professional practices.

This study considered professional input into collecting personalized donor information for later release to donor offspring. Existing studies report the importance of such information for identity completion, to satisfy curiosity, and to allay anxiety about genetic inheritance. The study used a three-pronged approach: a literature search of professional practices in this and related fields; key informant telephone interviews with donor-conceived adults, sperm and egg donors, and professionals and a postal survey of UK clinics' practices and views. The literature revealed only one previous study, which suggested gendered approaches to pen portraits were used in commercial donor banks. Key informants agreed on the importance of information for offspring well-being and the need for support services in its compilation and on release. Donors reported inadequate professional assistance to date. The postal survey of clinics revealed variable practices in the process of acquiring and storing later life information and variable success in achieving its completion. Respondents identified factors that hinder completion (donor anxiety, lack of guidance, shortage of staff time) and factors that help (donor belief in the importance of later life information, staff belief, dedicated staff time). Further research, including intervention studies, is needed into the processes and skills involved in collecting later life information.

Completing the surrogate motherhood process: parental order reporters' attitudes towards surrogacy arrangements, role ambiguity and role conflict.

This study investigated the attitudes of parental order reporters (PORs) towards their work with surrogacy arrangements and their experiences of role conflict and role ambiguity. A questionnaire was used to assess PORs' perceptions of their role in parental order [PO] applications, attitudes towards surrogacy arrangements and the legal process and the influence of role ambiguity or conflict. Questionnaires were distributed to all PORs employed by the Children and Family Court Advisory and Support Service in England. Thirty-three PORs participated (response rate 46%) who, on average, had each completed five PO applications (range 1-40). Positive attitudes towards surrogacy and the child's needs for openness about origins were found. Concerns about the inadequacy of preparation and assessment arrangements, overseas arrangements and non-regulation of surrogacy agencies were evident. PORs with high-role ambiguity were more likely to report less positive attitudes towards the emotional consequence of surrogacy on offspring. High scores on role ambiguity and role conflict were reflected in less positive attitudes towards the parties' preparation towards parenthood. These results have implications for training, policy and practice in this area.