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

Expectations and experiences of gamete donors and donor-conceived adults searching for genetics 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) 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

Voluntary DNA-based information exchange and contact services following donor conception: an analysis of service users’ needs

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

‘This neo- natal ménage à trois’: British media framing of transnational surrogacy

Background: Media framing can influence people’s perceptions of social changes in family building, and has the potential to influence their future actions. Objectives: to analyse the type of framing and construction used in British news print of transnational commercial surrogacy. Methods: UK newspapers were searched using the search engine Lexis-Nexis. One hundred ninety seven articles were analysed. Content analysis was undertaken to identify the use of gain, loss, neutral, alarm and vulnerability frames, as well as type of construction (i.e. ethical, social, legal, financial and medical). Four researchers independently analysed articles using a coding strategy. Results: Differences between serious (mainly legal, financial), middle market (legal) and tabloid (social, financial) newspapers were found. There were three main foci; buying babies - affordable only to those wealthy enough to pay for it; the legal complications of transnational surrogacy - reporting a sense of the legal system lagging behind this practice; and gay families - repeatedly questioning their suitability as parents - demonstrating a prevailing heterosexual stereotype about reproduction and parenting. Conclusions: Stereotyping was prevalent and the welfare of children and medical aspects of transnational surrogacy were minimally addressed, indicating the media selectively influences its readership

Secrets and disclosure in donor conception

This paper 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). It considers the narratives of how respondents found out they were donor-conceived and what events triggered disclosure of this information. It goes on to examine the role secrecy played in their family life and uses the concept of ‘display’ to explore how it 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

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

Ex vivo expansion and differentiation of erythroblasts: From culture dishes to stirred tank reactors for the production of red blood cells

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An exploration of spousal caregivers’ well-being after the death of their partners who were older cancer patients – A phenomenological approach

Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer. Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven. Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives. Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement

Single-machine scheduling with stepwise tardiness costs and release times

We study a scheduling problem that belongs to the yard operations component of the railroad planning problems, namely the hump sequencing problem. The scheduling problem is characterized as a single-machine problem with stepwise tardiness cost objectives. This is a new scheduling criterion which is also relevant in the context of traditional machine scheduling problems. We produce complexity results that characterize some cases of the problem as pseudo-polynomially solvable. For the difficult-to-solve cases of the problem, we develop mathematical programming formulations, and propose heuristic algorithms. We test the formulations and heuristic algorithms on randomly generated single-machine scheduling problems and real-life datasets for the hump sequencing problem. Our experiments show promising results for both sets of problems

Barriers and facilitators perceived by healthcare professionals for implementing lifestyle interventions in patients with osteoarthritis:a scoping review

OBJECTIVE: To provide an overview of barriers and facilitators that healthcare professionals (HCPs) perceive regarding the implementation of lifestyle interventions (LIs) in patients with hip and/or knee osteoarthritis (OA). DESIGN: Scoping review. DATA SOURCES: The databases PubMed, Embase, CINAHL, PsycINFO and the Cochrane Library were searched from inception up to January 2021. ELIGIBILITY CRITERIA: Primary research articles with a quantitative, qualitative or mixed-methods design were eligible for inclusion if they reported: (1) perceptions of primary and/or secondary HCPs (population); (2) on implementing LIs with physical activity and/or weight management as key components (concept) and (3) on conservative management of hip and/or knee OA (context). Articles not published in English, German or Dutch were excluded. DATA EXTRACTION AND SYNTHESIS: Barriers and facilitators were extracted by two researchers independently. Subsequently, the extracted factors were linked to a framework based on the Tailored Implementation for Chronic Diseases checklist. RESULTS: Thirty-six articles were included. In total, 809 factors were extracted and subdivided into nine domains. The extracted barriers were mostly related to non-optimal interdisciplinary collaboration, patients’ negative attitude towards LIs, patients’ low health literacy and HCPs’ lack of knowledge and skills around LIs or promoting behavioural change. The extracted facilitators were mostly related to good interdisciplinary collaboration, a positive perception of HCPs’ own role in implementing LIs, the content or structure of LIs and HCPs’ positive attitude towards LIs. CONCLUSIONS: Multiple individual and environmental factors influence the implementation of LIs by HCPs in patients with hip and/or knee OA. The resulting overview of barriers and facilitators can guide future research on the implementation of LIs within OA care. To investigate whether factor frequency is related to the relevance of each domain, further research should assess the relative importance of the identified factors involving all relevant disciplines of primary and secondary HCPs. PROSPERO REGISTRATION NUMBER: CRD42019129348