'Swimming against the tide' : an exploratory study of the experiences of growing up with fertility concerns following cancer treatment

This thesis considers the impact on growing up among young people diagnosed in their teens with cancer and told that fertility impairment may result. The exploratory study informed by grounded theory recruited seventeen males and twenty-one females (overall take-up 35 per cent). Single in-depth interviews were conducted in two age groups - 13 to 21; 21 and over. Five were parents. Findings were considered theoretically within lifespan approaches and resilience theory. Protective or risk factors were Identified within the approach of participants or those around them - including professionals and services, family members, friends and romantic partners. Reactions ranged from being little troubled to deep distress. Strength of desire to parent and the stigma of infertility heightened concerns as did feelings of having little control over fertility outcome. Concerns were eased - but not removed - with the provision of regular, unambiguous information, access to help with strategy building, presence of stored gametes, hope of retention of reproductive function, availability of confidantes including friends and romantic partners, positive experience of disclosure and achievement of parenthood. Across all spheres, fertility matters were· raised less frequently than were other cancer matters by participants or those around them. This was only helpfUl when it reflected protective communication or low concern. The personal and social meaning of fertility matters, including fertile identity implications, appeared more influential than age and life stage and was .dynamic across time and context. Gender too carried social as well as biological challenges, including around fertility analysis. Where return to 'normality' wasprioritised, fertility concerns were marginalised but presented periodic threats. Although many reported gaining strength through having had cancer none did so in relation to fertility matters. For some, fertility concerns overtook those associated with cancer. Preferred professional attributes and suggestions for service developments across disciplines and agencies were identified.

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. 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 made contact with 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, about 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 research and highlights directions for future research in this area

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 recommendation

Searching for ‘relations’ using a DNA linking register by adults conceived following sperm donation

This paper considers how sperm donor-conceived adults registered with a voluntary DNA linking register, UK DonorLink, constructed identity and relatedness by examining two areas: how their identity was affected by becoming aware that they were donor-conceived; 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 neglected area. This study is the first to consider the experiences of those searching through a DNA-based register, and contributes to the growing literature on searching. This paper presents qualitative data from a questionnaire-based study with 65 adults conceived following sperm donation. It examines emerging linkages by investigating how ideas of relatedness, kinship and identity were enacted and how narrative certainties were moved and removed by opening up new conceptions of what it means to be ‘related’. Their knowledge of being donor-conceived was both a powerful disrupter and a consolidator of family relationships. No single story of being donor-conceived emerged – with competing narratives about the effects and implications for respondents’ kinship relationships and sense of identity. This study sheds light on how kinship relationships are negotiated and managed in adulthood by those conceived following sperm donation and how this can change over the life-course

Countdown begins for ending donor anonymity in British Columbia

The regulation of assisted human reproduction in Canada has had a long and tortuous history. Twenty-one years after a Royal Commission appointed by the federal government recommended legislation [1], and following several failed attempts to get legislation through the Canadian parliament, the Assisted Human Reproduction Act 2004 came into force [2]

'Think of a number, then double it': playing a numbers game with donor conception?

The report of the British Fertility Society's (BFS) Working Party on Sperm Donation Services in the UK (1) recently hit the headlines, following an associated editorial in the British Medical Journal (2). However, the report's proposals for a fundamental overhaul of the current arrangements for organising donor recruitment were considered less 'newsworthy' than suggestions that the maximum number of families containing a child conceived from the gametes of a single donor should be increased (3)

What are children’s ‘best interests’ in international surrogacy?

Almost twenty five years after the United Nations Convention on the Rights of the Child came into force in 1990, social workers are identifying new threats to the rights and needs of children. New family forms resulting from surrogacy arrangements are now possible because of cutting-edge medical technologies and the growing global market in ‘medical tourism’. Jurisdictions across the world are challenged to respond appropriately – especially where commissioning parents are either unclear about the law or are determined to circumvent it. The burgeoning numbers of commercial brokers and doctors with financial interests, and pressure from within the consumer lobby and the fertility industry to loosen international and domestic restraints on surrogacy arrangements, mean that these new challenges require new responses to ensure the best interests of the children involved are adequately catered for

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

What are children’s ‘best interests’ in international surrogacy?

Almost twenty five years after the United Nations Convention on the Rights of the Child came into force in 1990, social workers are identifying new threats to the rights and needs of children. New family forms resulting from surrogacy arrangements are now possible because of cutting-edge medical technologies and the growing global market in ‘medical tourism’. Jurisdictions across the world are challenged to respond appropriately – especially where commissioning parents are either unclear about the law or are determined to circumvent it. The burgeoning numbers of commercial brokers and doctors with financial interests, and pressure from within the consumer lobby and the fertility industry to loosen international and domestic restraints on surrogacy arrangements, mean that these new challenges require new responses to ensure the best interests of the children involved are adequately catered for