Marilyn Crawshaw

Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years.

Discussion and management of potential reproductive health sequelae of adolescent cancer are essential and challenging components of care for the multidisciplinary team. Despite this, research has been limited to specific experiences (e.g. sperm banking) or fertility-related concerns of adult survivors. This grounded theory study of 38 male and female survivors of adolescent cancer aged 16-30 years drew on in-depth single interviews to map the range of experiences of being advised that treatment might affect fertility. Strong support for being told at around diagnosis was found regardless of gender, age, incapacity or availability of fertility preservation services. Age and life stage appeared less significant for impact than the perceived level of threat to personal and social well-being. Women were more likely to achieve lower levels of comprehension about the physiological impact, to report later distress from lack of fertility preservation services and to revisit more frequently those decisions made by the few offered fertility preservation. Men found decision making about sperm banking straightforward on the whole and reported satisfaction with having the choice regardless of outcome. Findings suggest that young people can cope with this information alongside diagnosis especially when professional and parental support is proportionate to the particular impact on them.

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

Abstract 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.

The changing profile of surrogacy in the UK – Implications for national and international policy and practice

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 scrutiny 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.

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.

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.

Abstract 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.

Expectations and experiences of gamete donors and donor-conceived adults searching for genetic relatives using DNA linking through a voluntary register

STUDY QUESTION What are the experiences of donor-conceived adults and donors who are searching for a genetic link through the use of a DNA-based voluntary register service? SUMMARY ANSWER Donor-conceived adults and donors held positive beliefs about their search and although some concerns in relation to finding a genetically linked relative were reported, these were not a barrier to searching. WHAT IS KNOWN ALREADY Research with donor-conceived people has consistently identified their interest in learning about-and in some cases making contact with-their donor and other genetic relatives. However, donor-conceived individuals or donors rarely have the opportunity to act on these desires. STUDY DESIGN, SIZE, AND DURATION A questionnaire was administered for online completion using Bristol Online Surveys. The survey was live for 3 months and responses were collected anonymously. PARTICIPANTS/MATERIALS, SETTING, AND METHODS The survey was completed by 65 donor-conceived adults, 21 sperm donors and 5 oocyte donors who had registered with a DNA-based voluntary contact register in the UK. The questionnaire included socio-demographic questions, questions specifically developed for the purposes of this study and the standardized Aspects of Identity Questionnaire (AIQ). MAIN RESULTS AND THE ROLE OF CHANCE Motivations for searching for genetic relatives were varied, with the most common reasons being curiosity and passing on information. Overall, participants who were already linked and those awaiting a link were positive about being linked and valued access to a DNA-based register. Collective identity (reflecting self-defining feelings of continuity and uniqueness), as assessed by the AIQ, was significantly lower for donor-conceived adults when compared with the donor groups (P < 0.05), but not significantly different between linked/not linked or length of time since disclosure of donor conception (all Ps > 0.05) for donor-conceived adults. LIMITATIONS, REASONS FOR CAUTION Participants were members of a UK DNA-based registry which is unique. It was therefore not possible to determine how representative participants were of those who did not register for the service, those in other countries or of those who do not seek information exchange or contact. WIDER IMPLICATIONS OF THE FINDINGS This is the first survey exploring the experiences of donor-conceived adults and donors using a DNA-based voluntary register to seek information about and contact with genetic relatives and the first to measure aspects of identity using standardized measures. Findings provide valuable information about patterns of expectations and experiences of searching through DNA linking, identity and of having contact in the context of donor conception that will inform future research, practice and policy development. STUDY FUNDING/COMPETING INTERESTS No funding was obtained for this study. The authors have no competing interests to declare except for M.C. who was national adviser to UKDL from 2003-2013. TRIAL REGISTRATION NUMBER Not applicable.

Disabled people's access to social work education--ways and means of promoting environmental change

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.

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.

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.

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.