Anonymous Donors Research Articles

Knowledge and perceptions of South African blood donors towards biobanking and stool donation.

The complexity of contexts and varied purposes for which biome donation are requested are unknown in South Africa. The aim of this study was to provide strategic data towards actualisation of whether a stool donor bank may be established as a collaborative between Western Cape Blood Services (WCBS) and the University of Cape Town (UCT). We designed a cross-sectional, questionnaire-based survey to determine willingness of WCBS blood donors to donate stool specimens for microbiome biobanking. The study was conducted between 01 June 2022 and 01 July 2022 at three WCBS donation centres in Cape Town, South Africa. Anonymous blood donors who met the inclusion criteria were enrolled. Anonymised demographic and interview data were analysed statistically. Analysis of responses from 209/231 blood donors demonstrated in a logistic regression model that compensation (p < 0.001) and 'societal benefit outweighs inconvenience' beliefs (p = 7.751e-05) were covariates significantly associated with willingness to donate stool. Age was borderline significant at a 5% level (p = 0.0556). Most willing stool donors indicated that donating stool samples would not affect blood donations (140/157, 90%). Factors decreasing willingness to donate were stool collection being unpleasant or embarrassing. The survey provides strategic data for the establishment of a stool bank and provided an understanding of the underlying determinants regarding becoming potential donors. This is the first report on the perspectives of potential participants in donating samples towards a stool microbiome biobank in South Africa, a necessity for faecal microbiota transplantation (FMT).

Diagnosing a genetic disease in a donor-conceived child: case report and discussion of the ethical, legal, and practical issues.

We describe the unexpected challenges pediatricians may experience when children conceived with assisted reproduction are diagnosed with a rare genetic condition. A local case series triggered a dialogue between many stakeholders with varied expertise. Indeed, diagnosing a genetic disease in a child conceived by embryo, egg, or sperm donation is becoming more common now that genetic testing and in vitro fertilization (IVF) are readily accessible. However, how and whether to share that information with other stakeholders in the gamete donation process has not been fully explored, and the clinical responsibilities of the treating clinician remain ill-defined. This work centers on a patient with a confirmed diagnosis of X-linked nephrogenic diabetes insipidus. Ultimately, we found the same AVPR2 mutation in two children from two families conceived by egg donation. It led to multigenerational cascade diagnoses in the family of the shared, anonymous egg donor. First, we review current genetic testing practices in gamete donation and third-party reproduction. Then, we provide an overview of relevant genomic, ethical, legal, and psychosocial considerations for sharing relevant genomic information. Finally, and to maximize the best interests of genetic relatives, we discuss how a pediatrician can play a role in the early disclosure of relevant clinical information to all stakeholders in the gamete donation process, starting with the fertility clinic. While these clinical cases are cast in a Canadian context, we submit that its important lessons generally apply to medical systems of nearly all developed countries, broadly defined.

Intra-familial dynamics of knowledge and ignorance experienced by donor-conceived adults in Germany

This study explores how donor-conceived adults experience pre- and post-disclosure intra-familial dynamics of knowledge and ignorance in relation to their means of conception. Data were collected through an online survey of 59 individuals aged 21–46 years, who were recruited through the German support and advocacy group Verein Spenderkinder (the Association of Donor-conceived Children). Participants were born into families with heterosexual parents and learned about their conception via anonymous sperm donation between 5 and 46 years of age. Thematic qualitative text analysis revealed four main themes regarding the challenges donor-conceived adults face in reconciling their sense of identity and their relationships within the family: non-absoluteness of pre-disclosure ignorance, new fields of ignorance emerging post-disclosure, ways of dealing with the newly acquired knowledge, and conflicting ownership claims on knowledge and ignorance. These challenges pertain not only to knowledge and ignorance of the participants’ means of conception but also to the way in which (non-)knowing is perceived and managed by family members. Utilizing Peter Wehling’s taxonomy of ignorance as a theoretical framework, the study argues that intra-familial conflicts and challenges experienced by the participants can be attributed to either shifts in or stakeholders’ colliding claims to control the epistemic, social, and temporal dimensions of (non-)knowing in relation to the participants being donor-conceived.

The misappropriation of knowledge: unravelling the narratives of efficiency and donor fear in the medicalisation of reproduction for lesbian and bisexual women

The intersection between the feminist movement and the LGBTQIA + movement regarding assisted reproductive techniques has fostered greater openness towards the reproductive possibilities of lesbian and bisexual motherhood in Spain. Until February 2023, lesbian couples were obliged to marry in order to jointly register their children. Access to assisted reproductive technologies in Spain requires medicalised processes and the mandatory anonymity of sperm donors. In this context, we explore how lesbian mothers narrate their journeys towards parenthood through an analysis of interviews. As reproductive rights are individualised through the use of medical interventions, we apply the notion of reproductive justice as a lens to question how women’s bodies are medicalised through a cultural and socio-legal system that imposes mandatory anonymous sperm donation over other possible forms of kinship construction.

Donor conception, direct-to-consumer genetic testing, choices, and procedural justice: an argument for reform of the Human Fertilisation and Embryology Act 1990.

In this article, using theories of procedural justice and 'slow violence', we consider potential reform of the Human Fertilisation and Embryology Act 1990. Our theoretical discussion is underpinned by findings from the ConnecteDNA project, exploring how people affected by donor conception experience direct-to-consumer genetic testing (DTCGT). The negative impacts of DTCGT, especially shock discoveries about the circumstances of someone's conception in adulthood, are linked to donor anonymity, and how its continued protection is experienced as a barrier to the rights and agency of donor-conceived people. We focus on two key issues relating to the donor information access process set out in section 31ZA of the 1990 Act. The first is that it excludes certain cohorts of donor-conceived people, creating inequalities of access to donor information. The second is the impact of the use of DTCGT to search for that information. We discuss what a procedurally just process of law reform would look like, concluding that, whatever (prospective) approach to donor anonymity is taken, the donor information access process should be the same for all donor-conceived people. We thus argue that, even were the status quo to be maintained, reform of the donor information access process with retrospective effect would be required.

Perspectives on sperm donor anonymity: insights from donor-conceived adults in Belgium.

Are donor-conceived adults in Belgium interested in obtaining donor information, and do these interests vary based on their family backgrounds? Donor-conceived adults express a significant interest in obtaining donor-related information, with the highest interest reported by offspring from heterosexual couples compared to those from lesbian couple-parented or single-parent families. In Belgium, sperm donation is mainly anonymous, but the rise of direct-to-consumer genetic testing challenges this anonymity. This was a cross-sectional study involving an online nationwide survey conducted from July 2022 to October 2023. Participants, aged 18years and older and being aware of their anonymous sperm donor-conceived status, were recruited through various channels. A total of 203 participants were included: 62.6% grew up in heterosexual families with infertile fathers, 26.1% with lesbian couples, 8.4% with single parents, and 3.0% in various or diverse family structures. The survey was available in both French and Dutch and consisted of 43 questions, including a mix of yes/no questions and multiple-choice items. The average age of disclosure was 16.5 years, with notably later disclosure in heterosexual couple-parented households. A substantial 82.8% of donor-conceived individuals expressed a keen interest in obtaining non-personally identifiable donor information, while 69% were curious about personally identifiable donor data. Furthermore, 61.6% conveyed a desire for personal contact with their donors, and 26.6% advocated for the inclusion of the donor's name on their birth certificates. Participants raised in lesbian two-parent families exhibited the lowest level of interest in donor-related information compared with those raised in other family structures. An overwhelming 90.1% wondered about the possibility of having half-siblings from the same sperm donor. Analysis of survey responses on DNA database registration revealed that 55.2% of donor-conceived offspring were already registered, with 68.8% discovering the same donor offspring and 30.4% successfully locating their donors. Compared to individuals from other family structures, those raised in heterosexual couple-parented households exhibit a less positive attitude toward their conception through anonymous sperm donation. About 61.6% of donor-conceived individuals reported experiencing distinct emotions compared to their peers, while 44.1% encountered psychological difficulties related to anonymous sperm donation, primarily attributed to late disclosure. The majority supported the idea of informing the donor about the number of children he facilitated to conceive. Lastly, the study highlighted that 21.2% of donor-conceived adults considered becoming donors themselves, and 31.3% expressed willingness to use an anonymous donor whenever faced with fertility challenges. Our sample size may not fully represent all adults conceived through anonymous sperm donation in Belgium. Participation bias may have influenced the results, especially due to the overrepresentation of participants from heterosexual couples. Additionally, an association exists between individuals raised by heterosexual couples and late disclosure, complicating the analysis by introducing a confounding factor. The findings of this study contribute to a better understanding of the needs and preferences of donor-conceived adults, with significant potential impact on patient education and healthcare policy. Study funding was not obtained for this research. There are no conflicts of interest to disclose. N/A.

Establishment of a national travel medicine vaccination network to assess reactogenicity of new and rarely used vaccines: a TropNet study.

The successful establishment and roll-out of a post-licensing surveillance network to assess the reactogenicity of rarely used new vaccines by anonymous data donation to rapidly share early experiences from daily practice.

P-492 Providing implications counselling to SA anonymous oocyte donors donating to Australian recipients raising Australian DCC in an open- donor-identity context?

Abstract Study question How do counsellors manage mismatched expectations of stakeholders involved in cross-border oocyte donation between Australia and South Africa with different socio-legal frameworks regarding donor anonymity? Summary answer Cross-border oocyte donation can produce mismatched expectations due to different socio-legal frameworks around donor anonymity between two countries. Counsellors should alert stakeholders to these implications What is known already The demand for oocyte donation in Australia exceeds supply, influencing Australian women to undertake cross-border oocyte donation in South Africa. In Australia, oocyte donation is altruistic and open identity with guaranteed identity release. Conversely, South African oocyte donors are compensated and anonymous. The widespread utilisation of direct to consumer (DTC) ancestry DNA testing and internet-based forums to assist in the interpretation of these results has enabled recipients and donor conceived people (DCPs) to learn the identity of previously anonymous gamete donors. To better prepare stakeholders, some regulatory authorities require counsellors to discuss these implications with donors and recipients. Study design, size, duration Semi-structured in-depth interviews (lasting 45-60 mins) were conducted via zoom and in person in 2022 and 2023. The study included 9 South African infertility counsellors, 16 South African oocyte donors and 12 Australian recipients of cross-border oocyte donation in South Africa. Interviews were recorded and transcribed and transcripts were coded using NVivo software. Data were analysed using thematic analysis Participants/materials, setting, methods Infertility counsellors (9) were recruited through networks of SA fertility professionals. Research participant Australian recipients (12) were recruited through a Facebook peer fertility forum for recipients planning or having completed oocyte donation in SA. Research participant SA oocyte donors were recruited through Facebook advertisements and through snowball sampling resulting from recruitment advertisements placed in clinics and oocyte donor agencies Main results and the role of chance South African oocyte donors anticipated that they would remain anonymous. Some indicated that they would be open to contact should the legal framework in South Africa allow it. As Australian recipients were not required to undergo implications counselling with South African counsellors, the South African counsellors were not aware that recipients pursued the identity of their donors. The counsellors did not alert South African oocyte donors that Australian recipients and DCPs may engage in measures to determine their identity, including via DTC DNA testing and online sleuthing through forums. The Australian recipients believed donor conceived children had a right to know the donor’s identity and donor siblings’ identity, with some wanting early contact. Some recipients took steps to determine their donor’s identity and/or to discover whether their donor conceived children had donor siblings. They suggested that their children could pursue DNA testing in the future, if they wanted to know about their genetic origins. Limitations, reasons for caution The study findings are from 9 SA counsellors, 16 SA oocyte donors and 12 Australian recipients who agreed to be interviewed. They may not represent the views of all stakeholders involved in cross-border oocyte donation between Australia and South Africa. Wider implications of the findings Stakeholders involved in cross-border oocyte donation between anonymous donor and open identity settings should receive implications counselling to avoid a mismatch in the consequences of donor-conception. Trial registration number not applicable

O-181 It takes more than genes to build a family

Abstract Sperm donation has been known to mankind possibly for a very long time, although first medical reports come from the late 18th century. Initially, most inseminations in married couples were homologous, involving the husband’s semen. The first publicized breakthrough that came in 1884 would today be considered unethical, as an anesthetized woman was subjected to an injection of semen from a handsome (as duly reported) student of medicine, without any consent of both her and her spouse. The veil of secrecy that covered heterologous insemination was finally lifted when Dr Mary Barton openly acknowledged the practice in her clinic and published the first manual on “artificial insemination.” It set the ethical standards for such procedures—including mutual anonymity of donors and recipients and maintaining absolute secrecy of the fact of donor insemination—for decades to come. The cost was of course the lost identity of the conceived children and the often reported emotional detachment of the fathers from their social, but not genetical, offspring. The grave consequences of the limited pool of donors were yet to be discovered with the advent of DNA testing. In the UK, Barton’s husband and another collaborator were confirmed to father at least 100 children each. In the Netherlands, the country was shaken by the case of Jan Karbaat who used the sperm of an anonymous donor—who probably should not have even passed psychological screening—to bring more than 200 babies to the world. Suddenly, lots of adults learnt of the existence of their never expected siblings. Concomitantly, more and more parents revealed the fact of donor conception to their children motivated by openness. The secrets could not be held any longer and Joanna Rose was the first British woman that won a court case in 2002 against her own country that was wilfully breaking her right to respect for private and family life guaranteed by European Convention on Human Rights. The proponents of open donation found support also in Convention on the Rights of the Child. More and more countries started enforcing either open or at least double-track donation from then on. However, even more legislations blissfully ignore these ethical developments and maintain complete anonymity of the donor insemination procedures. This is where my personal story begins, as a father of twins born in 2012 from in vitro fertilization thanks to the semen of an anonymous donor. At that time, Poland even did not have an actual law on fertility treatment. The ART centres adopted their own policies on anonymous donation and signed contracts with their patients on a case by case basis. The legal status in my country was further cemented with the long overdue adoption in 2015 of Act on Fertility Treatment that forbids non-anonymous donation and even excludes the prospective parents from the decision process on the choice of the donor. The burden of partially lost identity of my kids will be with me possibly my entire life. But I don’t want it to cast a shadow on our family relations. We have to deal with my non-genetic fatherhood one way or another. We maintain our family ties in full knowledge of the fact of the existence of some unnamed benefactor that made this possible. Maybe one day my children will find some unsuspected genetic relatives via increasingly popular public DNA banks if they choose so, thus sticking together parts of their identity. Only time will tell.

O-230 The ethics of disclosing reported conditions in donor-conceived offspring to recipients of the same donor

Abstract Study question To what extent should new genetic risk information, identified after donation, be disclosed to recipients? Summary answer Withholding new genetic risk information from donor sperm recipients may sometimes be ethically justified or even preferred. What is known already In some cases, donor-conceived persons are born with (suspected) harmful genetic mutations. These occurrences may flag increased genetic risks for others if the donor is used for multiple recipients. Genetic conditions can also emerge in donors or their families after donation. Current guidelines, such as those established by the European Directorate for the Quality of Medicines &amp; HealthCare, recommend contacting recipients “in the case of a diagnosis that may seriously affect a child’s health”. However, the specific timing of such disclosures and the circumstances under which (or even whether) information may be withheld are unclear. Study design, size, duration This normative analysis draws initial insights from empirical data obtained from a quantitative study into current practices of fertility clinics and extends to a comprehensive review of academic literature and international guidelines. It evaluates current practices and explores the justifications for (not) informing recipients about (possible) genetic risks linked to their donor, guided by bioethical principles. Participants/materials, setting, methods In June 2023, an electronic questionnaire was sent to all fertility clinics in Belgium to obtain information on current practices regarding the management of genetic mutations in donor treatment. The responses from 15 clinics provided empirical insights that served as an impetus for the subsequent normative analysis. This analysis integrated the findings with normative considerations using the ‘wide reflective equilibrium’ method. Main results and the role of chance Our findings revealed considerable diversity in current practices. Some clinics always informed recipients of newly identified genetic risks (possibly) related to their donor, while others based their decision on various factors. The main arguments for disclosing this information are clinical utility (beneficence) and respect for the recipient’s autonomy. Withholding health-related information can be harmful, especially if it impedes diagnosis and treatment. Moreover, when sperm samples are reserved for additional children from the same donor, disclosure facilitates better-informed reproductive decisions. Conversely, non-disclosure is sometimes justified on the same grounds. If the recurrence risk is absent or equivalent to the general population risk level, disclosure could cause undue alarm and overtreatment. These harms may outweigh the marginal benefits of (immediate) disclosure, particularly for unconfirmed, late-onset, non-severe, and untreatable conditions. Respecting autonomy also implies recognizing the right not to know, by allowing recipients to prespecify the type of information they wish to receive (e.g., untreatable conditions). However, other factors can complicate this assessment. When early diagnosis is crucial, confirming the donor’s link to the reported condition or determining the recurrence risk may take too long. Additionally, a thorough risk analysis becomes more intricate if insemination is planned, embryos are created, or during pregnancy. Limitations, reasons for caution This analysis focuses on cases with anonymous donors and excludes situations involving identifiable and known donors. If the recipient and donor know each other, a distinct set of ethical considerations and duties may emerge. Wider implications of the findings The need for a nuanced, context-sensitive ethical framework for the disclosure of (potential) harmful genetic mutations in a donor to recipients of donor sperm is highlighted. Such a framework could inspire policy development and support ethical decision-making in fertility treatments. Trial registration number Not applicable

P-483 Unraveling motivations and ambivalence among egg donors: an exploratory study in Portugal

Abstract Study question Which motivations drive women to consider egg donation in Portugal, and how does the level of ambivalence play a role? Summary answer Higher motivation to help others and valuable genetics were associated with a lower ambivalence, while financial motivation was associated with a higher ambivalence towards donation. What is known already Egg donation has become a common treatment option for patients struggling with infertility. Therefore, understanding the egg donors decision-making process is crucial. Previous studies have shown that the motivations for egg donation are multifaceted and vary as a function of individual characteristics, such as motherhood and sexual orientation. Egg donors consistently report altruism as their main motivation for donation, but little is known about their ambivalence. Our aim was twofold: (1) to investigate the motivations of egg donors in Portugal; (2) to investigate and compare the levels of ambivalence towards egg donation in relation to the motivations and socio-demographic characteristics. Study design, size, duration Descriptive cross-sectional study conducted in two Portuguese Fertility Centers. Participants were 177 Portuguese women who demonstrated their intention to become egg donors through an online form (www.soudadora.pt). The candidates were invited by e-mail to participate in this study and informed consent was obtained prior to the data collection. The data were collected through an online questionnaire prior to the screening and donation process, between November 2023 and January 2024. Participants/materials, setting, methods Participants were 177 Portuguese women (Mage = 27.30, SD = 4.26). Motivations were measured through a self-report scale focusing on five dimensions: “to help others”, “empathy”, “valuable genetics“, “to procreate”, “financial compensation”. Ambivalence was measured through a self-report scale focusing on mixed feeling about the donation. Data analysis included descriptive and inferential methods to establish differences in motivations, as well as associations between participant's ambivalence, motivations, and socio-demographic characteristics. Main results and the role of chance The motivations with higher scores were to help others (M = 11.03, SD = 1.54; min. = 0, max. = 12) and valuable genetics (M = 3.62, SD = 0.75; min. = 0, max. = 4; all paired-sample t-test p &amp;lt; .001), while the financial compensation revealed the lowest scores (M = 3.48, SD = 1.83; min. = 0, max. = 8; all paired-sample t-test p &amp;lt; .001). The ambivalence levels towards donation were generally low (M = 2.58, SD = 1.74, min. = 0, max. = 7). A higher motivation to help others and valuable genetics were significantly associated with a lower ambivalence (r(175) = -0.18, p = .014; r(175) = -0.18, p = .020, respectively). On the other hand, a higher financial motivation was significantly associated with a higher ambivalence towards donation (r(175) = 0.21, p = .01). Moreover, the higher the number of children, the higher the womeńs empathic motivations (r(175) = 0.50, p &amp;lt; .001). Women who identified as homosexual/bisexual reported higher motivations to procreate, as compared to heterosexual women (t(161) = -2.84, p = .01). The educational level did not significantly influence either the motivations or ambivalence of the candidates to egg donation. Limitations, reasons for caution Relying on self-report questionnaires might have introduced bias (social desirability). Investigating whether the motivations and ambivalence of these women correlate with their inclusion on the donation program and with their post-donation satisfaction could provide valuable insights. Donor anonymity is a key aspect in the decision-making process which was not addressed. Wider implications of the findings Understanding egg donors’ motivations is pivotal for several aspects, such as maintaining ethical standards and predicting donation outcomes. Identifying and addressing ambivalence could contribute to improved donor well-being and a successful donation. Overall, understanding the decision-making process enables a more effective and personalized approach, benefiting both donors and recipients. Trial registration number Not applicable

Managing risks for genetic conditions in donor sperm treatment: current practices in Belgian fertility clinics

Research questionHow do fertility clinics in Belgium manage risks for genetic conditions in donor sperm treatment? DesignAn electronic questionnaire was distributed to all fertility clinics in Belgium in June 2023, focusing on treatments with anonymous sperm donors from 2018 to 2022. Responses from 15 clinics were analysed anonymously using IBM SPSS statistics. ResultsAll clinics assessed donor risks, including a personal and family history, conventional karyotyping and (for 83.3% of the clinics) carrier screening for common autosomal recessive conditions. For recipients, 58.3% of the clinics relied only on a personal and family history. Despite efforts, the suspicion or detection of genetic conditions in donor sperm treatment was prevalent, with 9.4 adverse events reported per 100 children born. When adverse events occurred, most clinics (58.3%) would not inform the donor if no additional genetic testing was needed. Around 1 in 4 (26.7%) clinics always informed recipients about an adverse event possibly related to their donor. An equal number (26.7%) categorically ruled out the use of spermatozoa from a donor after an adverse event was traced back to his DNA, and 53.3% would not consider using the donor when the adverse event was not genetically confirmed. For the other clinics, deciding when to disclose new genetic risk information or when to allow the use of a donor linked to an adverse event was a complex matter involving different considerations. ConclusionAlthough suspected or detected genetic conditions linked to donor treatments were common, there was wide variation in how Belgian clinics prevented and managed these situations.

O-170 The next generation of adolescents will consider more and more multiparenthood, poliparenthood

Abstract Although there are a variety of ways in which people navigate their intimate lives, theories of human development and intimacy often implicitly assume a preference for monogamy to be universal (Seltzer, 2000; Conley et al., 2017; Moors et al., 2017). While many people around the globe indeed engage in serial monogamy, remarkable transformations in relationship and family demography have occurred over the past several decades (Glick, 1988; Fisher, 1989; Finkel et al., 2014; Foster, 2016, in Moors et al. 2021) Studies show that 1 out of 6 people (16.8%) desire to engage in polyamory, and 1 out of 9 people (10.7%) have engaged in polyamory at some point during their life. (Moors et al 2021). Besides seeking hypotheses on the reason for this change away from the monogamous relationship form, and based on these data, we can try to make a prediction about the willingness of people to also consider parenthood in consensual non-monogamous or polyamorous relationships and thus engage in polyparenthood in the future. In the fertility centre too, we are past an era in which heterosexual infertile couples form the majority of our patient population. The need for donor material is increasing, although demand grossly exceeds supply. In addition, in many countries donor anonymity is still enshrined in law, which poses a problem for a growing number of acceptors. Many patients desire information about the donor and an increasing number of patients anticipate the perspective of the future child, which has a right to know its origins. Other patients wish the donor would also include parental involvement, and fundamentally desire the genitor to be a co-parent for their child at some point. As a result, some patients seek refuge in non-regulated open donation arrangements outside the fertility clinic. Indeed, internet websites dedicated to facilitating contact between individuals who want to meet people with the common aim of having a child are mushrooming. Such websites make elective co-parenting accessible to large numbers of people, including both singles and those with partners. Furthermore, these websites are not restricted to LGBTQ+ individuals; heterosexual men and women can also become members and contact potential reproductive partners who may be of a different sexual orientation to themselves. This could trigger a paradigm shift in the fertility clinic; is co-parenting, multi-parenting and poly-parenting the future? It could resolve problems of donor shortage, and the often difficult search for roots still faced by donor-conceived children as a consequence of donor anonimity. At Brussels IVF, we anticipated this paradigm shift and developed a procedure to counsel candidates for co-parenting. Welfare of the child is the guiding principle leading to a joint parenting project worked out together with the co-parents. This procedure and counseling topics to be addressed by the fertility centre will be presented.

Anonymous Gamete Donation: a Case for Balancing Under Article 8 ECHR.

Anonymous gamete donation creates a specific conflict between human rights and public interests under Article 8 of the ECHR. This was first assessed in the ECtHR's landmark decision in Gauvin-Fournis and Silliau v. France of 7 September 2023. This article critically analyses this judgment, taking into account the European legal framework for anonymous gamete donation, the recommendations of the competent authorities and the previous case law of the ECtHR on the right to know one's biological origin as an integral part of one's identity that is protected under the right to private and family life.

Acceptance and rejection of “morally challenging” behaviour in online sperm donation communities: narrative interviews with recipients and donors

IntroductionOnline sperm donation allows those hoping to conceive a baby (“recipients”) to meet prospective sperm donors online, via “connection” websites or social media. These sites offer some advantages to clinical donation (including lower costs and greater choice over donation arrangements) but previous research has suggested that these sites may also pose risks and challenges to those who use them. Therefore, the aim of this exploratory research was to better understand online sperm donation communities and the experiences of both recipients and donors, particularly with respect to situations that could be “morally challenging” or involve harm.MethodsThree prolific donors and five recipients were interviewed using an in-depth narrative approach. Carol Gilligan's Listening Guide was employed to analyse the data.ResultsThe findings demonstrated that the donors sought to find ways to maintain autonomy in their donating practices and were concerned about the character and parenting abilities of recipients, as well as the potential for recipients to make unwarranted complaints. The recipients were concerned about their safety and finding a donor they could trust, discussing issues relating to donor “dishonesty”, online abuse, and a lack of support from connection sites and related authorities. Both donors and recipients identified “morally challenging” behaviour relating to donor anonymity (donor use of fake online profiles or aliases) and the sexual motivations or (mis)conduct of some donors. The participants each discussed the ways in which they managed perceived risks.DiscussionThe degree to which the participants voiced their acceptance or rejection of challenging behaviour in online sperm donation communities varied across and within participants, highlighting the complexity of the way in which people interact in this environment. Further research is required to understand how this form of sperm donation can be as safe and supportive as possible, while also respecting the importance to donors and recipients of autonomy and choice when making donation arrangements.

Effect of NaV1.7 blockers on post-ganglionic sympathetic nerve function

NaV1.7, also known as the sodium voltage-gated channel alpha subunit 9 (SCN9A), plays a critical role in action potential induction and conduction in pain-causing nociceptors. Accordingly, NaV1.7 blockers may be effective non-opioids analgesics. SCN9A is also expressed in autonomic neurons, but its functional role in the autonomic system is less established. We employed three highly selective NaV1.7 inhibitors to investigate the role of NaV1.7 in action potential conduction in postganglionic sympathetic nerves and in sympathetic adrenergic contractions of blood vessels. Our single neuron rt-PCR analysis revealed that nearly all neurons (32/39) isolated from guinea pig stellate ganglia expressed NaV1.7 mRNA. Genentech Pharmaceuticals provided a highly selective NaV1.7 blocker, GNE8493, which exhibits a selectivity ranging from 500 to 5000-fold for NaV1.7 over all other NaV subtypes. SiteOne Pharmaceuticals contributed another mechanistically distinct and highly selective NaV1.7 blocker, ST2262, with a selectivity of 1000-fold for human NaV1.7 over other NaV subtypes (as reported in Sci Rep. 10:14791, 2020). Unfortunately, ST2262 has little affnity for rodent and guinea pig NaV1.7. We quantified the effect of GNE8493 on postganglionic compound actional potentials (CAP) within the sympathetic trunk of superior cervical ganglia (SCG). GNE8493 inhibited the CAP in the postganglionic neurons of SCG by ~ 70% (n=5, p&lt;0.01). With such a significant impact of the NaV1.7 blocker on post-ganglionic actional potential conduction, we were prompted to explore its potential physiological relevance. Our study involved the isolated pulmonary arteries from anonymous human lung donors (obtained from IIAM) and isolated pulmonary arteries and the abdominal aorta from guinea pigs. We measured smooth muscle tension using standard tissue bath techniques. Stimulation of intrinsic nerves was achieved through electrical field stimulation (EFS) at 12V, 1msec, and 10Hz for 30 seconds, resulting in rapid contractions in all tissues. These contractions were completely prevented by the nonselective NaV1 blocker tetrodotoxin and by the alpha adrenoceptor antagonist prazosin. The contractions were quantified as a percentage of the maximum adrenergic contraction achievable, induced by the addition of 100 μM phenylephrine at the end of the experiment. In guinea pigs, GNE8493 completely blocked sympathetic contractions of the isolated pulmonary arteries (IC50 of -log (M) 5.8) and abdominal aorta (IC50 of -log (M) 6.4 ± 0.3). In human pulmonary arteries, GNE8493 (1 μM) and ST2262 inhibited the sympathetic contractions 94% and 87%, respectively (p&lt;0.01, n=6). These findings support the hypothesis that pharmacological inhibition of NaV1.7 using selective inhibitors has the potential to reduce sympathetic function in specific vascular beds. R35HL155671 - BJU F32HL170490 - JSK. This is the full abstract presented at the American Physiology Summit 2024 meeting and is only available in HTML format. There are no additional versions or additional content available for this abstract. Physiology was not involved in the peer review process.

Parents' disclosure to their donor-conceived children in the last 10 years and factors affecting disclosure: a narrative review.

Disclosure of donor conception has been advocated in several jurisdictions in recent years, especially in those that practice identity-release donation. However, research on disclosure decisions has not been consolidated systematically in the last 10 years to review if parents are telling and what factors may be impacting their decisions. Are parents disclosing to their donor-conceived children, and what factors have influenced their disclosure decisions across different contexts and family forms in the last 10 years? A bibliographic search of English-language, peer-reviewed journal articles published between 2012 and 2022 from seven databases was undertaken. References cited in included articles were manually scrutinized to identify additional references and references that cited the included articles were also manually searched. Inclusion criteria were articles focused on parents (including heterosexual, single mothers by choice, same-sex couples, and transsexual) of donor-conceived persons in both jurisdictions with or without identity-release provisions. Studies focused solely on surrogacy, donors, donor-conceived persons, or medical/fertility staff were excluded as were studies where it was not possible to extract donor-recipient parents' data separately. Both quantitative and qualitative studies were included. Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed and Joanna Briggs Institute Critical Appraisal Tools for Systematic Reviews were used to assess article quality and bias. Thirty-seven articles met the inclusion criteria representing 34 studies and 4248 parents (including heterosexual, single, same-sex, and transsexual parents although the majority were heterosexual) from countries with anonymous donation and those with identity-release provisions or who had subsequently enacted these provisions (Australia, Belgium, Finland, France, Hong Kong, Middle East, Spain, Sweden, the UK, and the USA) A general trend towards disclosure was noted across these groups of parents with most disclosing to their donor-conceived children before the age of 10 years. Further, the majority of those who had not yet told, reported planning to disclose, although delayed decisions were also associated with lower disclosure overall. Same-sex and single parents were more likely to disclose than heterosexual parents. There was recognition of disclosure as a process involving ongoing conversations and that decisions were impacted by multiple interacting intrapersonal, interpersonal, and external contextual and social factors. Methodological limitations, such as the different population groups and contexts from which participants were drawn (including that those parents who choose not to disclose may be less likely to participate in research), are acknowledged in integrating findings. This review has reinforced the need for a theoretical model to explain parents' disclosure decisions and research exploring the role of legislative provisions, culture, and donor/family type in decision-making. Greater ongoing access to psychological support around disclosure may be important to promote parent and family well-being.

Monocyte response to SARS-CoV-2 protein ORF8 is associated with severe COVID-19 infection in patients with chronic lymphocytic leukemia.

The open reading frame 8 (ORF8) protein, encoded by the SARS-CoV-2 virus after infection, stimulates monocytes/macrophages to produce pro-inflammatory cytokines. We hypothesized that a positive ex vivo monocyte response to ORF8 protein pre-COVID-19 would be associated with subsequent severe Coronavirus disease 2019 (COVID-19). We tested ORF8 ex vivo on peripheral blood mononuclear cells from 26 anonymous healthy blood donors and measured intracellular cytokine/ chemokine levels in monocytes by flow cytometry. The percentage of positive monocyte staining in the sample and change in mean fluorescence intensity (ΔMFI) after ORF8 were used to calculate the adjusted MFI for each cytokine. We then tested pre-COVID-19 peripheral blood mononuclear cell samples from 60 chronic lymphocytic leukemia (CLL) patients who subsequently developed COVID-19 infection. Severe COVID-19 was defined as hospitalization due to COVID-19. In the 26 normal donor samples, the adjusted MFI for interleukin (IL)-1β, IL-6, IL-8, and CCL-2 were significantly different with ORF8 stimulation versus controls. We next analyzed monocytes from pre-COVID-19 PBMC samples from 60 CLL patients. The adjusted MFI to ORF8 stimulation of monocyte intracellular IL-1β was associated with severe COVID-19 and a reactive ORF8 monocyte response was defined as an IL-1β adjusted MFI ≥0.18 (sensitivity 67%, specificity 75%). The median time to hospitalization after infection in CLL patients with a reactive ORF8 response was 12 days versus not reached for patients with a non-reactive ORF8 response with a hazard ratio of 7.7 (95% confidence interval: 2.4-132; P=0.005). These results provide new insight on the monocyte inflammatory response to virus with implications in a broad range of disorders involving monocytes.

Emerging Ideas: Personal identity and mother–child relationship: Experiences of young adults raised by single mothers by choice

ABSTRACTObjectiveThis qualitative study examined the experiences of young adults raised by single mothers by choice and the way the circumstances of their upbringing have modeled their personal identity and mother–child relationships.BackgroundBeing conceived through anonymous sperm donation may create uncertainty among children and young adults. However, there is little research on the implications of this situation from the perspective of young adults.MethodIn‐depth narrative interviews were conducted with 21 young Israeli adults born to single mothers by choice as a result of anonymous sperm donation.ResultsThe findings revealed several themes regarding the relationship with the mother, including her image as influential, exclusive, and deeply invested in the relationship. The interviews highlighted anxiety of abandonment and dependency on the mother, who was presented as both powerful and vulnerable or dependent on her child. Participants expressed mix of appreciation and anger toward their mothers' decision. They often conveyed that their mothers had openly and transparently discussed the circumstances surrounding their birth.ConclusionThe experience of children of single mothers by choice conceived by sperm donation is complex, including mixed feelings regarding their relationship with their mother and the effects of the father's absence on their life and identity.ImplicationsThe findings underscore the importance of considering anonymity in sperm donation within policy and bioethical research. Additionally, they carry implications for interventions aimed at supporting single‐mother‐by‐choice families.

Molecular characterization of the nonstructural 5A (NS5A) region of hepatitis C virus in Thai blood donors.

Direct acting antivirals (DAAs) have been developed for hepatitis C virus (HCV) therapy, and they are usually effective, however resistance to DAA regimens has also been reported to have a significant impact. Resistance associated substitutions (RASs) in the NS5A region are known to be correlated with failure of DAA therapy. HCV genotypes 3a and 1 are the most prevalent genotypes in Thailand. This study analyzed the type and frequency of RASs associated with DAA failure, focusing on the NS5A region. Serum samples of HCV genotype 3a, 1a, and 1b infection from Thai blood donors were selected. The NS5A region was amplified using reverse transcription-polymerase chain reaction (RT-PCR). A phylogenetic tree was constructed to identify the genotypes of HCV. Nucleotide sequencing and amino acid sequencing were conducted to determine the prevalence of RASs. Construction of the phylogenetic tree indicated that 29 samples were genotype 3a, 11 samples were genotype 1a, and 9 were genotype 1b. Both HCV genotypes 1a and 3a can be categorized into two subclades. Results showed that the NS5A substitutions A30V/K, A62T/V/I/M/P/S/L, and S98G were present in HCV genotype 3a. In HCV genotype 1a, only NS5A RASs H54Y was detected. NS5A amino acid substitutions Q54H and P58L were found in HCV genotype 1b. In conclusion, NS5A RASs at amino acid positions 30, 62, 54, 58, and 98 are present within HCV genotypes 3a and 1. While keeping in mind that additional information was not available on the anonymous blood donors tested in this study, these findings can contribute to understand the NS5A mutation. Further study with known patients under drug treatment is recommended.