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This article describes a voluntary Friends Scheme that sits alongside a temporary relocation scheme for Human Rights Defenders at the University of York, UK. Members of the Scheme, including the scheme's co-ordinators, are all volunteers drawn from the local community with a remit to befriend the Defenders, help orient them to the city and UK lifestyles and offer the opportunity to experience day-to-day life outside of the university. With the erosion globally of the operational space for Human Rights Defenders' work, many are in situations of serious risk to their health, well-being and even life, jeopardizing their long-term ability to conduct their work. This has in turn increased their protection needs with temporary relocation providing one mechanism for meeting these. The Protective Fellowship Scheme for Human Rights Defenders at Risk (PFS) at York offers an institutionalized programme and the Friends Scheme arose from the identified need for additional informal well-being support. In describing key aspects of its operation, their evolution over time, and its challenges and rewards, the article draws on feedback from both Defenders and Friends. It is brought up to date, outlining the impact of Covid-19. Experience to date suggests the use of a Friends Scheme can be a valuable part of temporary relocation programmes for Defenders, staff running such schemes, the volunteer Friends and the local community. The use of a systemic approach to its organization through having clear processes, regular communication from and between the co-ordinators and PFS, and providing individual and group support appears valuable. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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? [ABSTRACT FROM AUTHOR]

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. Keywords: Human fertilisation and embryology authority; British fertility society; Donor anonymity; Egg sharing; UK

This article discusses the topic of surrogacy and its impact on surrogate-born infants and their families. It highlights the ongoing debate and controversy surrounding surrogacy laws and regulations, particularly in the UK. The article argues for a shift in perspective to view surrogacy within a child and family framework, emphasizing the importance of considering the well-being and long-term outcomes for the children involved. It also raises concerns about the lack of research on surrogacy and the need for more evidence-based approaches to support surrogate families. [Extracted from the article]

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. [ABSTRACT FROM AUTHOR]

This paper considers the experiences of adults conceived following sperm donation, who were registered with a voluntary DNA linking register and considers: how awareness of being donor-conceived affected their identity and family relationships; and the process of searching for their donor and donor-conceived siblings. The views and experiences of donor-conceived adults has, until recently, been a relatively neglected research area. This study is the first, to our knowledge, to consider the experiences of donor-conceived adults using a DNA-based register. This paper presents qualitative data from a questionnaire-based study with 65 adults conceived following sperm donation. It examines how ideas of relatedness, kinship and identity are enacted and how narrative certainties are challenged by opening up new conceptions of what it means to be ‘related’. No single story of being donor-conceived emerged - with competing narratives about the effects and implications for respondents’ kinship relationships and sense of identity. The knowledge of being donor-conceived could be both a powerful disrupter and a consolidator of existing family relationships. This study sheds light on how identity and kinship relationships are negotiated and managed by donor-conceived adults, both with their existing family and donor ‘relations’, and how these can change over the life-course. [ABSTRACT FROM AUTHOR]

Abstract: 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

Medical science has enabled the creation of families through the use of donor conception but some lifelong policy and practice implications are only recently being recognized. Research and practice have shown that donor conception can, for some, carry substantial long-term consequences. In this paper we present findings from a questionnaire-based study that sought to shed light on donor-conceived adults’ and gamete donors’ views on service and support needs when searching for genetic relatives with the aid of DNA testing. The findings demonstrate the complexity and sensitivity of providing services in this newly emerging area of need. Such provision requires collaboration between very different disciplines and agencies (scientific and psychosocial), introduces the potential for blurring of lines of accountability and responsibility, and highlights the challenges of identifying appropriate funding streams. In addition, the findings demonstrate the opportunities and limitations afforded by the use of DNA in identifying unknown genetic relatives. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article presents the 2012 third edition of the British Infertility Counselling Association's "Guidelines for Good Practice in Infertility Counselling". A discussion of a free pdf download of the guidelines which is available at the web site of the association, located at www.bica.net, is presented.

Objective:To gather respondent feedback about whether workshops for heterosexual couples, lesbian couples and single women considering donor conception treatment (i) aided decision-making and (ii) improved intentions and confidence about openness with offspring.Background:Research indicates donor offspring consider that risk to their well-being is heightened if not made aware of their origins from infancy. However, some parents do not disclose this information, especially heterosexual couples. Preparation for Parenthood workshops were run by Donor Conception Network, a UK support group, using parent facilitators.Methods:A survey was sent simultaneously to those who attended 16 workshops over two years (2008–2010) (n= 246), with each partner in couples invited to respond separately. Results were considered descriptively as follows: all respondents; those in heterosexual and lesbian couples by intended donation type; single women. Open comments provided tentative understanding of quantitative results.Results:Response rate: 32.4% (n= 79); both partners responded in 86% couples. Workshops were rated as predominantly helpful by all groups for deciding whether to proceed. There were similar improvements in feeling comfortable with the idea of becoming donor conception parents, surety about openness with children and knowing when and how to start the process. Openness with social networks appeared more challenging to achieve. Levels of congruent couple responses increased post-workshop, starting from low levels on some aspects. Couples considering egg donation showed the widest variation in responses.Conclusions:Workshops appear helpful in aiding decision-making and in preparing for openness with any offspring across family types and whether considering sperm, egg or double donation. [ABSTRACT FROM AUTHOR]

Since 2007, the numbers of UK Parental Orders granted following surrogacy have markedly increased. More recently, eligibility criteria have been extended to unmarried heterosexual couples and same-sex couples rather than only married couples. Numbers seeking fertility treatments, including through surrogates, outside their country of residence have also increased. This paper presents the limited data currently available - from UK General Register Offices, Child and Family Court Advisory and Support Service for England and the UK surrogacy agencies: COTS, Surrogacy UK, British Surrogacy Centre - to consider potential reasons for the increase and to consider policy and practice implications. It charts the apparent decline in involvement of surrogacy agencies and suggests the potential for exploitation where scmtiny of arrangements and follow up are limited. It recommends improvements to data collection and argues the need for a more integrated approach to review of surrogacy arrangements both nationally and internationally. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article focuses on the perception of donor conception by donor-conceived children and adults. Topics include the legality of early parental disclosure, calls for greater transparency in collaborative reproduction, and donor-conceived individuals' access to genetic and medical information. Information is provided on anonymity and nondisclosure laws.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This article reports on a Knowledge Transfer Partnership project between a local authority and a university, the aim of which is to encourage a culture of evidence-informed practice and continual improvement across the local authority's Family Services Directorate as part of its performance management framework and to ensure that the Research Governance Framework for Health and Social Care (DH, 2001) is fully implemented. The article describes the successful completion of some of the key stages of the project, including developing and implementing an improvement strategy aimed at increasing levels of engagement with research and evidence-informed approaches to practice. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This paper outlines a 22 year campaign to introduce openness into the arena of donor conception in the UK. It identifies key aspects of the development of an advocacy based approach to such work and argues that social work values and principles can prove key to identifying structural inequalities which are not necessarily based in socio-economic disadvantage. Donor conceived people may find themselves in families which enjoy material privilege hut whose exposure to a legislative framework and dominant professional cultures within the treatment centres encourages secrecy around genetic origins. Social workers' experience of adoption and family work leads them to recognise the danger of such secrets within families. Turning such social is- sues into policy changes requires vision, strategic long term advocacy and partnership with those directly affected. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Disabled people are under-represented among social workers. It is argued that this results in lack of diversity in the workforce and in reduced opportunities to make service delivery more inclusive. An audit tool is outlined which can be used to identify barriers and strengths at DipSW programme, university site, agency site and individual student level to disabled people entering social work education. Completed audits could then form the basis of DipSW Programme Development Plans or curriculum plans for individual students, as required. Review mechanisms at the different levels would help ensure that attention to planning and action does not get lost. Assessment issues and aspects of the practice teacher/student/tutor relationships are also discussed. Disability equality training is seen as a central component of audit and provision. The need for proactive, not reactive, policies is made clear. [ABSTRACT FROM AUTHOR]

In this article, the authors discus the article "Sperm preservation in children: a prescription for consistency with both child protection and the criminal law," by R. Wheeler and colleagues. The authors mention that the principles of safeguarding was failed to apprehend by the researchers. The authors add that the researchers failed to acknowledge the possible human rights violation for the proposed blanket ban on offering pornographic material aid sperm banking.

Explores the numerous practice and ethical challenges posed by providing fertility preservation services to teenagers with cancer in Great Britain. Discussion about the key indicators for fertility impairment resulting from cancer and its treatment; Consideration of the liaison systems and protocols to be in place between the sperm bank and the pediatric oncology unit; Need of the staff in sperm banks and pediatric oncology units to be comfortable and confident enough to discuss any ongoing issues and concerns.