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.

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.

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.

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.

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.

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.

Prospective parents' intentions regarding disclosure following the removal of donor anonymity.

This short survey of UK infertility counsellors was designed to determine whether the removal of donor anonymity resulted in noticeable changes in prospective parents' stated intentions regarding disclosure of their origins to any children conceived through donor conception. Members of the British Infertility Counselling Association working in Human Fertilisation and Embryology Authority (HFEA) -- licensed centres, before and after the legal changes, were sent a short questionnaire that included space for free comments (take-up: 62%). Three-quarters reported changes. Of these, two-thirds said prospective parents were more likely to say they would disclose, while less than a tenth said prospective parents were less likely do so. Where no changes were noted, this was primarily because the majority of prospective parents had stated their intention to be open even prior to the legal changes. Possible influences on intentions included: the culture within the centre, moves towards openness within the wider society, and parents' lack of confidence regarding how to go about disclosure. Follow-up studies are needed to improve understanding of whether influences on decision making carry through to patterns of actual disclosure; whether involvement in counselling affects outcomes; and whether access to professional assistance at the time of planned disclosure is helpful.

Practice experiences of running UK DonorLink, a voluntary information exchange register for adults related through donor conception.

Previous practices of withholding information from those conceived through donor conception are changing. However, little is known about the service needs of those affected. In response to this, the UK Government-funded pilot voluntary information exchange and contact register, UK DonorLink, was launched in 2004, covering conceptions prior to August 1991. It is the only register worldwide that relies primarily on DNA testing to establish genetic connectedness in the absence of written records. Approximately 150 adults came forward to register in the first three years of operation, drawn from all interested parties. Matches between half-siblings have been made, but none yet between donor and offspring. Employing staff with expertise in post-adoption work has proved effective, as long as additional training and support specific to donor issues is provided. The infrastructure required to promote and deliver the service reflects the complex mix of skills and tasks required, and confirms that a service provided through independent counsellors alone would be inappropriate. Having a geographically and socially widespread potential registrant group, together with a limited budget, has limited the effectiveness of advertising and promotion campaigns. Ethical and emotional complexities arising through the direct service are highlighted, including those presented by DNA use.

Young males' experiences of sperm banking following a cancer diagnosis - a qualitative study.

Existing research into sperm banking by young males following a cancer diagnosis is predominantly quantitative; little is known about personal experiences, psychosocial and attitudinal barriers to it amongst patients and/or professionals, or the later impact of potential or actual subfertility when banking has or has not taken place. This qualitative study used single in-depth interviews with 16 males aged 13 to 20 at diagnosis (16 to 30 years at interview) to report retrospectively on their experiences, concerns and satisfactions. There was support for sperm banking, including among those who declined to bank or failed to do so successfully. Many reported that, when successful, it eased any later fertility-related concerns by offering a possible alternative route to biological fatherhood. There was satisfaction with levels of understanding, recall and decision making, though lack of clarity about consent conditions. Sperm bank professionals were less likely than oncology staff to achieve good rapport. Improvements to consent arrangements, facilities, written information and sharing of results were suggested. Small numbers from minority ethnic or disabled communities meant that any uniqueness in their experiences could not be identified. While some improvements to the process of sperm banking and follow-up can be acted upon with minimal implications, others may be more complex.

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.

The use of pornographic materials by adolescent male cancer patients when banking sperm in the UK: legal and ethical dilemmas.

Increased awareness of the importance of fertility concerns to teenage cancer survivors is leading to growing numbers of male teenagers being offered sperm banking at the time of diagnosis. This is now extending to males diagnosed with other conditions where gonadotoxic agents are used in treatment. The storage of sperm in these circumstances is a challenging aspect of health care, given the complex issues and timescale involved. UK law has been enacted to protect legal minors from the potentially harmful effects of exposure to pornographic materials, yet there is reason to suppose that their use in this context could have therapeutic benefit in aiding successful masturbation. This paper uses material gained through consultation with the eleven largest UK sperm banks and 94 male teenage cancer survivors, to discuss the associated legal and ethical dilemmas, including those around the role of parents/carers. Findings suggest that there is variable practice in sperm banks, that almost a quarter of teenage males wanted access to soft porn when banking sperm, and half wanted to bring in their own materials. It concludes that there is an urgent need for any legal barriers to the therapeutic use of pornographic materials to be understood and examined.

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.

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.

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.

Policy formation in gamete donation and egg sharing in the UK--a critical appraisal.

This article considers two key policy documents concerning donor-assisted conception in the UK, The British Fertility Society's Recommendations for Good Practice on the Screening of Egg and Embryo Donors and the Human Fertilisation and Embryology Authority's Guidance for Egg Sharing Arrangements. It discusses both the process and the evidence used in formulating those sections of the documents which relate to donor anonymity. The paper concludes that psycho-social policy developments in assisted conception, such as those relating to donor anonymity, should be subjected to comparable levels of rigour and scrutiny to those that are applied in the formulation of medical and scientific policies.

Lessons from a recent adoption study to identify some of the service needs of, and issues for, donor offspring wanting to know about their donors.

This paper draws on some of the major findings of a recent large-scale study of over 400 adult adopted people, who either searched for origins information or were sought out by birth relatives, to identify the potential profile of donor offspring seeking origins information. It is predicted that more women than men will search, that people who search will be in their twenties or older, and that the age at which searching begins may be delayed by the effects of the social stigma attached to gamete donation and by the greater likelihood of accidental disclosure in adulthood resulting from the higher incidence of secrecy about donor assisted conception. Two of the single triggers for adopted people to begin searching (as opposed to multiple triggers) - becoming a parent and the death of adoptive parents - may also be among the triggers for donor offspring to begin searching. The search may be complicated further when undertaken after accidental disclosure. Finally, it is argued that some donor offspring will experience a normative urge for identity completion and seeking relationships similar to that experienced by adopted people. This urge may stem from the fact that some donor offspring attach an identity to their donor that extends beyond needing factual details about their physical characteristics (though not necessarily a desire to establish a relationship). Some donor offspring are likely to encounter a desire for face-to-face contact, regardless of whether a face-to-face meeting was the original intention. The need for services to help donor offspring, donors, family members and others affected by the situation is identified.

Professionals' views on the issues and challenges arising from providing a fertility preservation service through sperm banking to teenage males with cancer.

Interviews were undertaken with 22 health and social work professionals. Their analysis was completed using "selective transcription", noting understanding of process, issues and themes, and building a picture against which to consider the analysis of subsequent interviews with teenagers and parents. Professionals were also asked to identify areas for feedback from these participants. This work was part of a larger study of (i) the perceptions of adolescent males and their parents of fertility preservation services following a cancer diagnosis, and (ii) national postal surveys of common practices, areas of variance and issues experienced by professionals in UK regional paediatric oncology centres and licensed assisted conception centres. A large number of concerns were identified, which reflected professionals' difficulties in building and maintaining a relevant, adequate knowledge and skills base given the limited numbers of teenagers offered this service. The lack of appropriate training about the legal and consent frameworks, and the processes involved was also highlighted across all professional groups as was the confusion around professional and legal responsibilities for follow up. Thus, there was considerable professional uncertainty in a number of aspects of this sensitive area of service provision. Consideration needs to be given to the needs for national guidance, for training, support and updating, for liaison between the different health and social care sectors that may be involved, and for appropriate information systems. These need to be in place for each stage of the process, from diagnosis through to eventual discharge from the health system.