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

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

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

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

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

Truth, Justice, Boobs? Analyzing Female Empowerment and Objectification in the Graphic Novel Genre

Female representation is a problem within the graphic novel genre. Positioned to sell as profitable commodities, women in this genre are grossly misrepresented, sexualized, and objectified. While many scholars acknowledge a problem with these debasing marketing techniques, few have critically analyzed the ways in which we sell the female body in graphic form. My project addresses the issue of female representation with special attention to body commodification. Capitalizing on my time spent working at a local comic bookstore and a series of twenty in-depth interviews that I conducted with comic book readers; I draw from a series of personal field notes, ethnographic observation, and transcribed interviews. I argue that female misrepresentation and sexualization is a problem that alienates and objectifies the female fan base. Ultimately, this project seeks to expose the ways in which we consume, sell, and objectify women in the graphic novel community

Continuous synthesis of Zn2Al-CO3 layered double hydroxides: A comparison of bench, pilot and industrial scale syntheses

© 2019 The Royal Society of Chemistry. Zn2Al-CO3 was produced continuously at bench (g h-1), pilot (100s g h-1) and industrial scale (10s kg h-1). Crystal domain length and BET surface area were similar at all three scales although there was a small increase at pilot scale. Platelet size increased from 120 nm at bench to 177 nm and 165 nm at pilot scale and industrial scale, respectively. Overall this paper shows that the increase in scale by almost 2000× does not impact on the overall product quality which is an excellent indicator that continuous hydrothermal synthesis is a route for nanomaterials synthesis

'It's a big deal, being given a person': why people who experience infertility may choose not to adopt

This article explores why individuals and couples who experience infertility and undergo treatment through new technologies do not subsequently go on to become parents via adoption. It does this in three ways: a review of the literature; interviews with those affected; and an online survey of views on adoption among people who have experienced infertility. It was found that couples do consider adoption alongside infertility treatment but it is usually a fallback choice. If adoption is to be perceived as an equal option, agencies need to offer support and advice at an earlier stage than is usual. Couples who are emotionally exhausted by medical interventions for their childlessness can then be helped off the infertility treadmill in order to become parents

Engineering enzymes with non-canonical active site functionality

The combination of computational enzyme design and laboratory evolution provides an attractive platform for the creation of protein catalysts with new function. To date, designed mechanisms have relied upon Nature’s alphabet of 20 genetically encoded amino acids, which greatly restricts the range of functionality which can be installed into enzyme active sites. Here, we have exploited engineered components of the cellular translation machinery to create a protein catalyst which operates via a non-canonical catalytic nucleophile. We have subsequently shown that powerful laboratory evolution protocols can be readily adapted to allow optimization of enzymes containing non-canonical active site functionality. Crystal structures obtained along the evolutionary trajectory highlight the origins of improved activity. Thus our approach merges beneficial features of organo- and biocatalysis, by combining the intrinsic reactivities and greater versatility of small molecule catalysts with the rate enhancements, reaction selectivities and evolvability of proteins. Please click Additional Files below to see the full abstract

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