Dr Francesca Taylor-Phillips

In recent years, there has been a rapid increase in people using online, unregulated websites and social networking groups to look for potential sperm donors and recipients (Freeman et al., 2016). Online sperm donation has received negative media attention, and it is framed as inherently ‘risky’ in the official documentation provided by medical and regulatory bodies (Gilman & Nordqvist, 2023). Despite this, only a small number of studies have been conducted on the practice to date, and these have mostly focused on the motivations of donors. Thus far, no reviews have been undertaken to identify what is currently known about online sperm donation, and where the gaps are in the evidence base. Additionally, no studies have been able to ascertain the extent of online sperm donation and to explore the scope and nature of the online platforms which facilitate the practice. Finally, qualitative experiences of recipients who have, or are planning to conceive, via this route are largely absent. Therefore, this thesis comprises three studies which sought to respond to these gaps in the evidence base through a contextualist, feminist epistemological lens. The first study is a systematic review of academic and grey literature on the characteristics, motivations, and experiences of donors and recipients who have used online sperm donation. A total of 23 papers/ reports/ book chapters were included in the review, and the findings were synthesised thematically, going beyond the original descriptive findings to generate new analytical themes. The second study was an environmental scan, which identified and mapped the scope, nature and characteristics of 61 online platforms, comprising over 350,000 members, which facilitate contact between sperm donors and recipients. The third study prospectively explored the experiences of 11 recipients of online sperm donation through a qualitative, longitudinal methodology. Creative, digital, and narrative methods were brought together to form an in-depth, chronological picture of the participants’ narratives over the course of one year: from the beginning of their search for a donor through to pregnancy and (in one case) postpartum. Together, the findings from the three studies make a unique contribution to the scholarly understanding of online sperm donation. The findings support suggestions that online sperm donation is a rapidly growing practice that is changing the landscape of donor conception (Harper et al., 2017). In line with previous research, the findings highlight the stigma associated with donor conception, and suggest that shame and secrecy are even more pronounced in the context of online sperm donation. The thesis provides evidence to suggest that online sperm donation is intrinsically different from clinic-based donation, and the necessity to communicate and meet up with the donor raises issues of trust and power for those engaging in the practice. The most positive finding to come from this research, however, was that online sperm donation provides recipients with an opportunity to form new kinship connections and to achieve their family-building goals in what is currently a restrictive medico-legal context (Taylor et al., 2022). Theoretically, this thesis demonstrates the usefulness of a contextualist, feminist epistemological framework for exploring online sperm donation. Practically, the findings point to the need to make online spaces safer, to provide reliable information, to change and challenge the policy context, and to increase institutional inclusivity for those considering, and undertaking, this route to parenthood.

Background The National Institute of Health and Care Excellence in the United Kingdom have recommended the development of a patient-reported outcome measure (PROM) specific to surgery for pelvic organ prolapse (POP), stress urinary incontinence (SUI), and complications of pelvic mesh surgery (MC). Aims To identify all aspects of quality of life (QoL) that may be impacted by surgery for POP, SUI and MC, to inform the development of a new PROM. Method Thirty-one patients who had undergone surgery for POP, SUI and MC (ranging from <6 months to >5 years ago) were purposively recruited from various National Health Service (NHS) Trusts, as well as community support groups for the conditions. Semi-structured interviews were undertaken over the phone or via video-conferencing software, and a framework approach was employed to analyse the data. A Patient and Public Involvement group, comprising seven women who had undergone surgery for POP, SUI and/or MC, were consulted on various aspects of the study. Findings We identified nine themes for potential inclusion in the PROM. The themes are short-term impacts of surgery; long-term impacts on pre-surgery symptoms; pain and/or discomfort; impact on daily activities; social and leisure activities; emotional wellbeing; sexual activity; personal relationships; and work/education. While some participants showed improvements in these areas following surgery, it was also evident that for some, issues persisted, worsened, or developed post-surgery. Those in the sample who had previous surgery involving mesh reported worse QoL outcomes overall. Conclusion The impact of surgery for POP, SUI and MC on QoL is multidimensional and complex. It is recommended that a future PROM encompasses the potential for improvement of symptoms, the failure of surgery to improve symptoms, the development of new symptoms after surgery, and the consequential positive and negative impacts of surgery on activity, roles, psychological well-being and ultimately QoL, in both the short and long term.

There has been an increase in people using online, unregulated websites and social networking groups to look for potential sperm donors in the hope of becoming parents. This practice is facilitated by online platforms which have been designed to connect the two parties who are looking to receive or donate sperm. We aimed to systematically map the scope, nature and characteristics of the digital landscape of online sperm donation (OSD). Using 51 search terms on Google and Facebook, we found 52 English-speaking OSD platforms globally (9 websites, one app, and 43 Facebook groups), comprising over 340,000 users. Most platforms resembled dating websites, while Facebook groups were forum-based, with 60% moderated by at least one sperm donor. By engaging with the concepts of bio and emotional capitalism and technological affordances, this study highlights the ways in which OSD platforms commodify human relationships, while simultaneously providing new possibilities for family-making outside the increasingly commercialized fertility industry.

There is evidence to suggest that online, unregulated sperm donation is growing in popularity and shifting the landscape of donor insemination. There is also anecdotal evidence that those searching for donors online (often referred to as ‘recipients’) may experience sexual harassment, homophobia and other forms of abuse from donors in both online and offline contexts. In response to this, we undertook a qualitative longitudinal (QL) study to explore the experiences of those searching for donors online. We recruited recipient individuals and couples who were at the start of their search for a donor, and interviewed them at 0, 6 and 12 months. This approach allowed us to capture the participants’ experiences of looking for a donor and attempting to conceive, through to pregnancy and the postpartum period. We brought creative, digital and traditional qualitative methods together to form an in-depth, chronological picture of the participant’s life over the course of the research. As Facebook is home to the largest number of dedicated online sperm donation groups, we saw an opportunity to create a Facebook group that was entirely separate from the donor-controlled spaces, where we could foster a sense of trust and community among recipients who often feel socially stigmatised, isolated, and are at risk of online victimisation. In this presentation, we will reflect on the benefits, drawbacks and ethical considerations associated with bringing participants of academic research together in an online space. We will discuss how Facebook groups can be of benefit to the participants themselves, as well as to those using QL approaches to research stigmatised populations. Finally, we will reflect on the use of Facebook as a methodological tool in QLR to gather multi-modal data, which can add richness and context to data collected through more traditional qualitative methods (e.g., narrative interviews).

Online, unregulated sperm donation has been hitting the headlines in recent years, but a question mark remains over the platforms powering the practice. Dr Francesca Taylor-Phillips, Professor Georgina Jones and Dr Rhys Turner-Moore investigate...

In recent years, there has been an increase in women obtaining donor sperm via unregulated websites and social media. In this article, we bring together the disparate evidence in this emerging field to consider whether restrictive UK policies and practices for regulated clinical donor insemination (DI) are a potential explanation for the growing use of the currently unregulated, online route to donor insemination. To this end, we examine the nature of the National Institute for Health and Care Excellence (NICE) guidelines, recent data provided by the Human Fertilisation and Embryology Authority (HFEA), and prior research on who uses online sperm donation and their reasons for doing so. In addition, we highlight why this issue is important by outlining some of the benefits and drawbacks of the unregulated route. We argue that, whilst there are many factors driving the unregulated route to DI, restrictive UK policies and practices for regulated DI might be one of these. We conclude that turning our attention to structural barriers, such as regulated DI policies and practices, is necessary to produce more definitive evidence of this potential issue, and that adopting a Reproductive Justice framework could lead to more equitable provision of regulated DI services.

In recent years, there has been an increase in people using websites, social media groups and mobile apps to connect with potential sperm donors or recipients. We undertook a systematic review of existing research which sought to: explore the characteristics, motivations and experiences of people who use online sperm donation platforms; assess the quality of the existing literature; identify gaps in the evidence base; and make recommendations for future research. Ten academic and grey literature databases and search engines (MEDLINE, CINAHL, PsycINFO, Scopus, Core, Google Scholar, Open Access Theses and Dissertations, NICE Evidence, Open Grey and Google) were searched in December 2019 and again in June 2024. The quality of the studies was assessed using the Mixed Methods Appraisal Tool and we undertook a thematic synthesis of the findings. The searches produced 18,614 results, of which 30 reports were included in the synthesis. The reports were published between 2010 and 2024, by authors from nine countries, and were qualitative (n = 19), quantitative (n = 7) and mixed methods (n = 4) in design. Four themes and two subthemes pertaining to participants’ motivations and experiences were constructed from the data. The themes demonstrate that OSD is an improvised practice that is laden with stigma and can produce imbalances of power between donors and recipients. The findings point to a need for further research, including prospective research, to be undertaken with more diverse samples, including populations in the Global South, Black and minority ethnic populations, and inexperienced donors.

Online sperm donation (OSD) facilitates recipient-donor connections through websites, social media, or mobile application software with the aim of enabling recipients to conceive with donated sperm (Taylor et al., 2023). Online sperm donation can be distinguished from 'regulated' donor conception, which takes place via clinics and is governed by codes of practice and, in some countries, legal frameworks (e.g., the Human Fertilisation and Embryology Authority in the UK). OSD is rapidly expanding, with over 60 English-language platforms hosting 350,000+ participants. These platforms, primarily managed by donors, vary in payment structures from free to fee-based, providing economic accessibility compared to clinics, but with new dynamics of power in family-making (Taylor et al., 2023). In this presentation, we will share preliminary findings from a one-year digital ethnography of six OSD sites. This was conducted as part of a larger ESRC-funded multi-phase and multi-method study into online sperm donation (see: https://www.theosdproject.com/). Five primary OSD sites were identified and selected using Taylor et al.’s (forthcoming) environmental scan of OSD platforms. A secondary, sixth site was identified during the digital ethnography. Consent to join the sites was obtained from the site owners. The research questions addressed in this presentation are: 1. How do OSD site owners and members create and maintain subcultural norms? 2. How is power enacted, reinforced, and/or resisted on OSD platforms? The types of data collected were: 1. the policies/guidelines from each site; 2. synchronous virtual interviews with five site owners; 3. asynchronous instant messaging interviews with site members; 4. fieldnotes from participating in the sites and researcher reflections. Qualitative data analysis involved collating, coding, and combining text to interpret meaning (e.g., Braun & Clarke, 2021). In this presentation, we will argue that the digital facilitation of sperm donation is not inherently harmful. This perspective challenges prevailing narratives in the media and some academic discourse regarding OSD. For example, warning people of 'fraudulent' or unethical donors and the health risks associated with OSD (e.g., Jewers, 2023). However, we also acknowledge the potential individual and socio-cultural implications of participation in OSD platforms and their creation and management, which may have harmful effects. Digital spaces are not "normatively neutral" (Stanfill, 2014, p. 1016); rather creators actively shape values, such as through policies or rules on member conduct (e.g., expectations for donor-recipient interactions) and online safety (e.g., guidelines for reporting to site moderators). Consequently, these digital spaces can influence ideals and norms about what is un/acceptable behaviour (e.g., whether it is acceptable for site members to offer or express a preference for sexual intercourse to conceive, rather than via artificial insemination) and these norms can be reinforced, accepted, and enacted, or resisted by site members. The preliminary findings from this study advance knowledge of digital lives/spaces and online governance, privacy, and safety.

In recent years, people looking for sperm (‘recipients’) and people providing sperm (‘donors’) are increasingly connecting via informal online platforms, such as websites and social networking sites. This growing practice – Online Sperm Donation (OSD) – has been accompanied by a proliferation of media articles and television programmes, with titles such as: “Seedy underbelly: social media sperm donors exposed”, “The frightening world of unregulated internet sperm donation sites” and Channel 4’s “4 Men, 175 Babies”. Despite growing concerns about the health, safety and legal risks associated with OSD, little is known about why people undertake it, and how those involved narrate their experiences of arriving at this route to parenthood. To this end, we present and discuss findings from two qualitative longitudinal studies: Phase One of the Online Sperm Donation Project (a four-year multidisciplinary project, funded by the Economic and Social Research Council), comprising 35 donors, recipients, partners and co-parents; and data from the first author’s PhD research, comprising 11 recipients/recipient couples. Both studies employed creative and narrative methods to provide rich insights into the participants’ lives over the course of their OSD journeys. In this paper, we present and discuss two salient and opposing narratives that participants oscillated between when articulating their experiences of arriving at OSD: ‘The Last Resort’ and ‘The First Choice’. The findings demonstrate that the rise of OSD reflects the restrictive NHS funding context and the commercialisation and medicalisation of the regulated fertility sector, as well as social and cultural shifts in family-making and kinship practices.

Background: In recent years, people looking for sperm (‘recipients’) and people providing sperm (‘donors’) are increasingly connecting via informal online platforms, such as websites, social networking sites and geolocation apps. This growing practice – Online Sperm Donation (OSD) – has been accompanied by a proliferation of media articles and television programmes which frame it as inherently risky, dangerous and ill-advised, and growing concerns from experts working in the fertility sector about the health, safety and legal risks involved. Objectives: In response, we sought to explore why people undertake OSD, and how donor, recipient and co-parent pathways to OSD are informed by dominant social, cultural and/or political narratives? Methods: We present and discuss findings from two qualitative longitudinal studies: Phase One of the Online Sperm Donation Project (a four-year multidisciplinary project, funded by the Economic and Social Research Council), comprising 35 donors, recipients, partners and co-parents; and data from the first author’s PhD research, comprising 11 recipients/recipient couples. Both studies employed creative and narrative methods to provide rich insights into the participants’ lives over the course of their OSD journeys, and both were guided by Public Involvement groups comprised of people involved in OSD (i.e. donors, recipients, site owners). Results and conclusions: Participants oscillated between two salient, but opposing narratives when articulating their pathways to OSD. ‘The Last Resort’ narrative frames OSD as an undesirable but necessary alternative, taken when clinical routes are inaccessible due to financial, medical, regulatory, or social barriers. By contrast, ‘The First Choice’ narrative reframes OSD as a preferred route to conception, valued for its potential to facilitate early disclosure to children about their donor, foster personal relationships and trust between parties, grant greater agency to donors, resist the perceived inaccessibility and commercialisation of fertility clinics, and enable a more intimate, less medicalised experience of conception.

People looking for sperm (‘recipients’) and people providing sperm (‘donors’) are increasingly connecting via informal online platforms, such as ‘connection websites’ and social networking sites. Typically, research has not focused on this route to conception. Little is known about how people involved in online sperm donation initiate, negotiate, sustain or end their relationships with each other, how power or influence operates within this context, or what the impacts of these influences might be. Previous research has suggested that abuses of power and morally challenging behaviour can occur. The first aim of this project is to explore the interpersonal relationships, power relations and potential abuses of power across the social ecology of online sperm donation. The second aim is to harness this new knowledge to explore the imagined ideal futures of those involved in online sperm donation and to work with them to start to realize these ideal futures. The project comprises three phases: (1) a two-year qualitative longitudinal study following the lives of prospective recipients, donors, and their partners via life story interviews, visual socio-ecological power narratives, and interaction logs; (2) a one-year digital ethnography of five online sperm donation sites; (3) action research workshops with recipients and their partners, donors and their partners, and platform owners, respectively. The multi-modal data will be analysed using narrative, discourse, and thematic analysis. The project will be carried out by a multi-disciplinary team, comprising academics and researchers with psychosocial, bioethical, medical, and legal expertise, and Public Involvement in Research members with lived experience of online sperm donation. The project will produce unique and holistic knowledge of online sperm donation and harness this knowledge to produce impacts across the social ecology that are identified by, and important to, those involved in online sperm donation.

There is evidence to suggest that online, unregulated sperm donation is growing in popularity and shifting the landscape of donor insemination. There is also anecdotal evidence that those searching for donors online (often referred to as ‘recipients’) may experience sexual harassment, homophobia and other forms of abuse from donors in both online and offline contexts. In response to this pressing social issue, we undertook a qualitative longitudinal study to explore the experiences of those searching for donors online. We brought creative, digital and traditional qualitative methods together to form an in-depth, chronological picture of the participant’s life over the course of the research. As Facebook is home to the largest number of dedicated online sperm donation groups, we saw an opportunity to create a Facebook group that was entirely separate from the donor-controlled spaces, where we could foster a sense of trust and community among recipients who often feel socially stigmatised, isolated, and are at risk of online victimisation. In this presentation, we will reflect on the benefits and drawbacks of bringing participants of academic research together in an online space. We will discuss how Facebook groups may be of benefit to the participants themselves, as well as to those using qualitative longitudinal methods to research stigmatised populations. Finally, we will reflect on the use of Facebook as a method for gathering multi-modal data, which can add richness and context to data collected through more established qualitative methods (e.g., narrative interviews).

We sought to find out if information about public funding for regulated donor insemination (DI) was available on UK fertility clinic websites, and if so, what information was provided for same-sex couples and single women; and if the available information was easily readable. The 'Choose a fertility clinic' pages of the Human Fertilisation and Embryology Authority (HFEA) website were used to identify all licensed fertility clinics in the UK, and any available text on public funding for DI treatment was extracted. The Flesch reading ease scores were calculated to determine the readability of the extracted text. Of the 52 clinics included in the synthesis, 23 mentioned public funding, and for 16 of these, it was unclear whether public funding was available. Six of the 23 clinics mentioned public funding for same-sex couples, and two mentioned public funding for single women. The Flesch reading ease scores indicated that none of the text about funding for DI treatment on any of the clinic websites met the NHS-advised level of readability for health information. Fertility clinic websites should specify whether they offer publicly funded treatment, and to whom, as well as clearly stating the eligibility criteria, using suitably readable language to communicate this.

BACKGROUND The Endometriosis Health Profiles (EHPs), the EHP-30 and EHP-5, are patient-reported outcome measures that were developed to measure the health-related quality of life (HRQoL) of women living with endometriosis. Prior to their development, a systematic review was undertaken which identified that the HRQoL of women living with endometriosis was poorly understood, with only three medical and one surgical study identified. OBJECTIVE AND RATIONALE The 20-year anniversary of the EHP-30 provided a timely opportunity to assess how the tools have been used and explore what the findings tell us about the impact of endometriosis and its associated treatments upon women’s QoL. Applying robust systematic review methodology, following PRISMA guidelines, we sought to answer: How many studies have used the EHP and for what purpose?; What are the demographic characteristics and international context of the studies?; What is the methodological nature and quality of the studies?; Which interventions have been assessed and what are the reported EHP outcomes?; and Can the EHP outcomes of these interventions be analysed using a meta-analysis and, if so, what do the results show? SEARCH METHODS The electronic databases MEDLINE, CINAHL, PsycINFO, PubMed, and Google Scholar were searched from the year the EHP was first published, in 2001 to 26 February 2020 using the search terms ‘EHP30’, ‘EHP5’, ‘EHP-30’, ‘EHP-5’, ‘endometriosis health profile 30’, and ‘endometriosis health profile 5’. We updated the searches on 9 April 2021. All included studies were quality assessed using the Mixed Methods Appraisal Tool (MMAT). OUTCOMES The review included 139 papers. In clinical intervention studies, the EHPs were deployed most frequently to measure the outcomes of medical (n = 35) and surgical (n = 21) treatment. The EHPs were also used in 13 other intervention studies, 29 non-interventional studies, 32 psychometric/cross cultural validation studies; six diagnostic studies, and in three other studies to measure outcomes in related conditions. They were mainly deployed in studies undertaken in Europe and North America. Overall, regardless of the nature of the intervention, most women reported improvements in HRQoL after treatment. Surgical interventions generally resulted in significant improvements for the longest amount of time. There was also evidence that when participants stopped taking medication their EHP scores worsened, perhaps reinforcing the temporary impact of medical treatment. Younger patients reported more negative impact upon their HRQoL. Further evidence using classical test theory to support the EHPs’ robust psychometric properties, including acceptability, dimensionality, reliability, validity (including cross-cultural), and responsiveness, was demonstrated, particularly for the EHP-30. Strikingly, using anchor-based methods, EHP-30 responsiveness studies demonstrate the largest mean changes in the ‘control and powerlessness’ domain post-intervention, followed by ‘pain’. MMAT outcomes indicated the quality of the papers was good, with the exception of five studies. A meta-analysis was not undertaken owing to the heterogeneity of the interventions and papers included in this review. WIDER IMPLICATIONS Women with endometriosis face a lifetime of surgical and/or medical interventions to keep the condition under control. Less invasive treatments that can lead to improved longer term physical and psycho-social outcomes are needed. The EHPs are reliable, valid, acceptable, and responsive tools, but more assessment of EHP outcomes using modern psychometric methods and in the context of women from ethnically diverse backgrounds and in routine clinical care would be beneficial. Given the brevity of the EHP-5, it may be the most appropriate version to use in routine clinical practice, whereas the longer EHP-30, which provides more granularity, is more appropriate for research.