Identity in Postgenomic Times: Epigenetic Knowledge and the Pursuit of Biological Origins

As genetic knowledge continues to strengthen notions of identity in Euro-American societies and beyond, epigenetic knowledge is intervening in these legitimation frameworks. I explore these interventions in the realm of assisted reproduction—including adoption, donor conception, and gestational surrogacy. The right to identity is protected legally in many states and receives due attention in public and private international law. Originating from the context of adoption, donor-conceived and surrogacy-born persons have recently demanded the same protections and focused on the right to genetic knowledge. This article explores possible implications of epigenetic knowledge on identity. I start by articulating the deep influence of genetics on the notion of identity, and how this unfolds in legal contexts. Next, I examine how epigenetic findings that stress the importance of seeing biological life as situated and embedded in environments can challenge how adoption, donor conception, and gestational surrogacy are experienced and understood. While I argue that epigenetic knowledge can reify identity with the same determinism underpinning genetics, it can also allow for more biosocial understandings of identity that consider history and experience as entangled with biology.

Secret Shame—Male Infertility and Donor Conception in the Wake of Retrospective Legislative Change

Historically, sperm donation was shrouded in secrecy to protect the normative family and the perceived vulnerability of infertile men. However, openness about donor conception is increasingly encouraged, in acknowledging that donor-conceived people may benefit from having access to information about their biogenetic origins. Since 2017 in the state of Victoria, Australia, donor-conceived people have been able to access previously anonymous donor records. Drawing on interviews with 17 donor-conceived adults who have come to know their donor through the new laws, this article explores the impact of finding out about the donor on relationships with mothers and fathers, and points to the persistent effects of stigma and shame about donor conception within families. Most of the donor-conceived participants were told about their donor conception in early adulthood. The age range for time of disclosure was mid-teens to early 40s. Most reported that their fathers did not want them to know. In some cases, mothers had disclosed, but sworn them to secrecy. Sensitivity to fathers’ feelings fostered a desire among participants to maintain secrecy about his infertility, especially in relation to wider family and friendship networks. Our findings revealed that secrecy about men’s infertility is heavily reliant on women’s emotional labor to protect ageing infertile fathers’ sense of manhood. Coupled with fathers’ overt resistance to openness, intergenerational secret keeping is perpetuated in families. Laws supporting openness potentially exacerbate the historical stigma associated with male factor infertility in a culture that continues to conflate virility, fertility, and masculinity.

P–508 The relational self in fertility decision-making: Chinese lesbians exploring donor conception and biological ties

Study question How does the cultural importance attached to biological family ties shape Chinese lesbians’ decision-making processes regarding whether and how to have children? Summary answer The cultural significance of biological ties shapes Chinese lesbians’ fertility decisions, including those regarding conception methods, who will get pregnant, and whose sperm to use. What is known already Previous research has shown that normative expectations towards opposite-sex marriage and biological parenthood impose significant psychological burden on lesbians in China, where same-sex couples are not entitled to the rights to partnership/marriage, assisted reproductive technology (ART), and parenthood. Despite the legal barriers, online discussions on same-sex parenthood and commercial consultation services targeted at same-sex couples who want to travel overseas to use ART have emerged in recent years. While more lesbians have become parents of donor conceived children in Western developed countries, little is known about Chinese lesbians’ reproductive experiences in the context of increasing reproductive transactions that transgress borders. Study design, size, duration In-depth, semi-structured interviews were conducted with 35 Chinese lesbians between July 2017 and June 2018 in Beijing, China. To better understand the context and social and clinical implications of global ART services for Chinese society, I also carried out participant observation by attending informal gatherings organised by the local lesbian community and public events targeted at (same-sex) individuals and couples who want to travel overseas to use ART and producing fieldnotes after the events. Participants/materials, setting, methods Participants were aged between 25 to 45. The majority were in their thirties. Each interview took around 2 hours and was audio-recorded and transcribed. The interview guide covered questions about their family beliefs, views on and/or experiences of donor conception, and perceived and actual difficulties in pursuing motherhood. With the assistance of NVivo (a qualitative data analysis software), I carried out thematic analysis of the interviews and fieldnotes to identify common patterns across the dataset. Main results and the role of chance Participants shared a belief that being biologically connected with their (prospective) children was, to varying extents, important to their families. They were at different stages of fertility decision-making, ranging from achieved motherhood (8 participants), actively planning to pursue motherhood (9), hesitation in taking action (11), and a lack of interest in or hope of becoming a mother (7). Almost all participants expressed that they did not prefer adoption and that they were reluctant to involve known sperm donors, who were considered a threat to their parental status. Rather, they were inclined to seek ART overseas in order to create their desired biological ties in a clinical setting. Issues including donor screening, desire for family resemblances, the status of biological and social mothers, and plans to purchase sperms from the same donor to conceive “siblings” were discussed in the interviews. It is evident that when deciding on whether to have a child and how to involve any third parties, participants tended to embrace the relational self and carefully balance individuals desires with familial and social expectations. The felt need to legitimise their relationships with donor conceived children imposes psychological burden on lesbian intended parents and discourages many from pursuing motherhood. Limitations, reasons for caution The findings of this qualitative study are not intended to be generalised to the whole lesbian population in China. Given the hidden nature of this population, my research, despite its small sample size, represents a significant step forward and calls for more quantitative and qualitative studies on lesbians’ fertility health. Wider implications of the findings: This study shows that lesbians’ journeys to donor conception require not only medical and legal support but also psychosocial care that attends to one’s perceived importance of biological ties and family beliefs. It sensitises healthcare professionals to the specific fertility-related psychosocial needs and concerns among lesbians in a family-centred context. Trial registration number Not applicable

P–505 The right age to tell? The insufficiency of the age criteria for characterizing the experience of French donor conceived families in disclosing to their offspring

Study question Is age a key criteria for characterizing the experience of families in telling donor offspring about the facts of their conception? Summary answer The study shows that, although donor offspring’s age at the time of disclosure has an impact, it is insufficient to describe these families’ experiences What is known already Secrecy was the norm for decades in donor conception, but “openness” has now become the new core value for institutions, professionals and interest groups. Accordingly, in recent years information-sharing practices have shifted in donor conceived families, but a proportion of parents, especially heterosexual couples, still appear to not inform their children about their being donor conceived. Disclosure recommendations seem difficult to apply in practice. A recurring question is: when should children be told? Age is presented as a key criteria: the younger the children are when their conception story is shared, the less of a problem it would create. Study design, size, duration The qualitative social science study includes two sets of semi-directive interviews conducted with 20 French sperm donor conceived adults (April-Dec. 2019) and 22 French parents by sperm, egg or double donation (Feb.-Oct. 2020). Calls for interviews aimed at donor conceived adults and parents by donation were shared on the Internet, in the media (press, radio, television) and through interest groups (PMAnonyme, BAMP!, MAIA) in France. The contact initiative was left to potential participants. Participants/materials, setting, methods Donor conceived participants include 17 women and 3 men conceived 1960–2000 through anonymous sperm donation in heteroparental families. The parent participants include 20 families (20 mothers, 2 fathers) who used donor conception—mainly anonymous (19)—in France, Spain and the Czech Republic starting in the 1980s. 17 conceived as heteroparental couples, 2 as solo-mothers-by-choice and 1 as a same-sex couple. 17 have already informed their offspring of the facts of their conception. Main results and the role of chance The participants’ experiences of disclosure appear to be bound to their historical and social context, especially regarding the prevailing norms on secrecy. Older parents mention having been advised by clinic professionals to keep the facts of their conception from their child(ren). Some also feared the stigma related to infertility. In contrast, some younger donor conceived participants recall the use of a children’s book while being told of their conception as toddlers. Beyond age, the larger context thus affects information-sharing practices. Furthermore, experiences of disclosure are impacted by the family context and history. Some are embedded within larger events such as divorces or the death of a family member. The story of the donation may be linked to narratives of diseases (such as cancer) or traumatic events (such as the loss of a fetus in utero) that may prevail over donor conception or make it untellable. Age proves to be an insufficient criteria to qualify these experiences, all the more so since “disclosure” sometimes unfolds in several steps. Some parents have first talked about their fertility issues without mentioning the use of a donor. Behind the prevailing norm of “openness”, difficulties in actually disclosing are confirmed. Limitations, reasons for caution Being qualitative, the study only includes a small number of participants without claiming exhaustivity nor representativity. It imperfectly reports on the view of those who do not disclose, as all participants question the principle of secrecy, many being members of interest groups defending openness. Wider implications of the findings: Our results complement existing studies that emphasize the weight of age in donor conceived families’ experience regarding disclosure. Age alone cannot describe information-sharing practices that are embedded within their historical and social context as well as the family context and history. Results thus inform familial difficulties related to disclosure. Trial registration number Not applicable

P–482 According to donor conceived adults, continuing the sharing-information process with parents about the donor conception is easier when the father took part in disclosure

Study question The opinion and feelings of adults after disclosure of the use of donated gametes for their conception Summary answer Disclosure is beneficial for 85.1% of donor conceived participants. Continuing the sharing-information process with parents is significantly easier when the father took part in disclosure What is known already Sharing information about the use of donor-conception with offspring is a complex process at several levels, involving in particular the parents’ will, the circumstances of disclosure, the child’s reaction, or the age of the child at disclosure. In this process, the child has a central position, source of force or friction. However, little is known about the opinion and feelings of adults who have been conceived through gamete donation. Study design, size, duration An online survey between March 2019 and September 2020. The opening of investigation was announced in media (press, radio, television), social networks, professional websites (CECOS French Federation…) and through interest groups (PMAnonyme, BAMP!, MAIA, ADEDD…) in France. Participants/materials, setting, methods Participants completed a standardized questionnaire intended for (spermatozoa or oocyte) donor conceived adults, available on the AP-HM website Main results and the role of chance 114 participants responded to the survey, 14 men and 100 women. The average age is 32.9 +/- 7.35 years old. Among them, 111 (97.4%) are born using sperm donation, 2 (1.8%) using oocyte donation, and 1 (0.9%) using double gamete donation. Their parents are 110 heterosexual couples, 3 single mothers, and 1 lesbian couple. For 113 (99.1%) of them, the parents had ART in France. Disclosure took place when they had 18.34+/–11.7 years old. The average time between disclosure and the survey participation is 14.58 +/- 8.77 years. Information was transmitted by the mother for 47.4%, the father for 8.8%, by both parents for 29.8%, and others for 14%. The circumstances of information are: always knew it (11.4%), at a time chosen by the parents (36%), following a health event (7%), during a conflict (16%), following my questions (14%), by chance discovery (13.2%). A subsequent sharing process was possible after disclosure for 89 (78.1%) participants, and impossible for 25 (21.9%) of them. The sharing process is considered as not difficult for 49.5%, but difficult for 50.5%. It is significantly easier to repeat discussion about the donor conception with their parents when the father took part in disclosure (p = 0.02). Limitations, reasons for caution Most of the participants are members of interest groups. This may induce a risk of selection bias. Participants are primarily conceived using donated spermatozoa within heterosexual couples. This conclusion may not be applied to oocyte donation or other family models. Wider implications of the findings: The present findings highlight the role of the father at the disclosure step, so that the subsequent information-sharing process is easier within the family. Trial registration number Not applicable

P–496 Alpha test results: Towards developing a digital prototype intervention to support parents’ disclosure about donor conception in the United States

Study question The objective of the study was to determine the usability, comprehensibility, and acceptability of a digital, decision-support aid prototype supporting parental disclosure of donor conception. Summary answer: This mixed methods design maximized participant feedback about the digital, decision-support aid prototype yielding rich insight about the prototype while minimizing participant and investigator burden. What is known already Although a paradigm shift is underway to remove the secrecy that has historically shrouded the practice of gamete donation, little is known about best practices that can support parents in disclosing the conceptional origins to their children. To address this gap, we created a decision-support aid prototype to facilitate parental disclosure post-treatment. In doing so, we followed the International Patient Decision Aid Standards Collaboration for developing decision-support aids, which recommends that Alpha testing (i.e., usability, comprehensibility, and acceptability) be completed to improve the quality of newly created decision-support interventions prior to Beta (i.e., real world) testing. Study design, size, duration A mixed-methods, triangulation design was used. Participants/materials, setting, methods Sixteen participants were purposefully selected based on desired characteristics and the needs of the study. Participants were asked to: (1) follow investigator prepared instructions for accessing the digital, decision-support aid; (2) complete a quantitative rating form about each slide within the decision-support aid prototype; and (3) participate in a qualitative, cognitive interview or focus group. Descriptive statistics and qualitative content analysis guided the iterative analysis. Main results and the role of chance The sample was composed of 10 parents that used donated sperm (n = 3), oocytes (n = 4), or embryos (n = 2) to conceive children and 8 clinicians; 2 participants were both donor recipient parents and clinicians. The interviews (n = 14) and one focus group (2 participants) ranged in length from 25 to 70 minutes (M = 47 minutes). Usability: Participants suggested refining the instructions for accessing the decision-support aid and upgrading the technology used to deliver the content. Common concerns were the inconsistent volume of the audio recordings and a need for higher quality images. Comprehensibility: Feedback obtained from the participants’ rating forms and in the interviews and focus group were consistently high about the ability to understand the content and the scope of the information presented. Acceptability: Participants noted the aid would resonate with parents. They recommended shortening the length of the aid, changing specific wording, modifying some of the video content, refining specific content for individual slides and the four modules. Unintended recommendations about how the aid might be used to provide clinician education or in international research were also reported. Limitations, reasons for caution Alpha testing is not designed to obtain all possible technological or content issues. Rather, it is a useful and recommended step in intervention development to mitigate existing technological bugs and key content issues prior to implementation of Beta testing of a decision-support aid. Wider implications of the findings: Other investigators that develop digital decision-support aids may consider the use of both quantitative and qualitative data collection methods during Alpha testing to refine digital interventions efficiently. The use of mixed methods not only captures rich and insightful feedback but also minimizes the burden on participants and investigators. Trial registration number Not applicable

O-060 Ethical implications of the direct to consumer genetic testing. What should donors and recipients know?

Abstract text The growth in the use of direct-to-consumer-genetic testing (DTCGT) is having a major impact on sperm, egg and embryo donor conception (hereafter donor conception). DTCGT services include family history sites, e.g. Ancestry.com, and medical testing sites, e.g.23andme. Despite the many different motivations people have for using these services, it is now easier to search and find donor relatives, with donor-conceived people, recipients of donor gametes and embryos, and donors all using these services to make hitherto unlikely connections. Some individuals have found large numbers of donor-siblings, while donors have been traced by their adult donor offspring. DTCGT can also reveal unexpected origins with the numbers of people finding out they are donor-conceived through DTCGT rapidly increasing. For example, one woman discovered she was donor conceived after using 23andme to assess her risk of breast cancer, an eventuality she had never anticipated when she decided to take that test. The increasing use of DTCGT has led to claims that donor anonymity is dead and we are entering a new era where the possibilities of finding our genetic relatives and extended family have dramatically expanded. These developments will produce new landscapes where different systems collide and interact, creating new ways of locating and finding donor relatives. In the UK for example, information on genetic relations, donors and donor siblings, is located within two very different systems: ‘official’ regulatory systems, such as central registers of information held by government bodies such as the Human Fertilisation and Embryology Authority’s (HFEA) registers; and emerging digital online systems, of DTCGT. This paper will explore how these new developments interact with existing ways of finding out information about donor relatives and consider the ethical and legal issues and challenges for fertility practice.