Legal age limits in accessing donor information: experiences of donor-conceived people, parents, sperm donors and counsellors.

RESEARCH QUESTION: What are the lived experiences of donor-conceived people, parents, sperm donors and counsellors related to legal age limits on accessing donor information in the Netherlands? DESIGN: A phenomenological study was carried out that included 20 donor-conceived individuals, 15 parents, 6 sperm donors and 5 counsellors. Data were collected through online qualitative in-depth interviews and focus groups. The data were analysed using Dahlberg's Reflective Lifeworld Approach. RESULTS: The results show how: (i) age limits create challenges related to dependency, autonomy and loyalty to parents; (ii) donor information can be important for identity development, which looks different at different ages; (iii) inaccessible information can lead to unfair loss and may be perceived as negative; (iv) relational stability provides a good foundation for dealing with the (in)accessibility of donor information; (v) procedural barriers and age limits increase the inaccessibility of donor information; and (vi) comprehensive counselling is desired for donor-conceived individuals, parents and donors. CONCLUSIONS: This study shows that legal age limits on accessing donor information can lead to several negative consequences. The age limits focus on one individual, which is not appropriate for questions about ancestry that always pertain to a relational network. Counselling should be tailored to the child's needs, and the child's family should be involved. Furthermore, the donor should receive independent counselling.

Lessons from 10 years' experience running the Fiom KID-DNA database, a voluntary DNA-linking register for donor-conceived people and donors in The Netherlands.

Worldwide, there is increasing acknowledgment of the importance of getting access to ancestry information. More and more countries facilitate access to this information through law changes and voluntary contact-services. In the Netherlands, the state-funded Fiom KID-DNA database was established in 2010 to facilitate information and/or contact exchange between those people who are genetically related as a result of donor-assisted conception. By the end of 2021, 846 donors and 2355 donor-conceived people are registered in the database. For 25% of the donors a link was found with one or more donor-conceived people, and 39% of the donor-conceived people were linked to a donor-profile. Fiom offers support by professionally qualified staff throughout the entire process from registration to contact to donor-conceived people, donors and their relatives. During the period of more than 10 years several challenges emerged; how does a state-funded DNA database function in the area of commercial DNA databases?; what can be learned from the continuous growing donor-conceived half-siblings networks?; how to deal with malpractices from the past and how to cope with ageing donors?

Meeting multiple same-donor offspring: psychosocial challenges.

Debates regarding donor-conceived people's rights to genetic information have caused some jurisdictions to abolish donor anonymity. Moreover, voluntary services have been established whose primary focus is providing possibilities to find information about the donor. A less discussed consequence is that donor-conceived people also find information about donor half-siblings: people conceived through the same donor. In the recent climate of openness and online DNA tests, there is an increased chance of finding multiple donor half-siblings. This study explored how donor-conceived people experience meeting multiple same-donor offspring in a group setting. Second, the study investigated donor-conceived people's need for support when meeting multiple donor half-siblings. A qualitative approach was used. Nineteen donor-conceived offspring who participated in donor half-sibling network meetings were interviewed. Using a grounded theory approach three themes were identified regarding group aspects: (i) defining group membership; (ii) regulating closeness and distance; and (iii) managing group dynamics. Professional support needs in relation to these themes were also analysed. While establishing relationships between donor half-siblings are viewed as generally more beneficial than connecting with a donor, this study showed that these new relationships also come with their challenges, and counselling may need to be refined towards a more specific same donor-offspring relationships' framework.

The interaction between donor-conceived families and their environment: parents' perceptions of societal understanding and attitudes regarding their family-building.

Disclosure issues in relation to donor conception have mainly been examined in the context of relationships and interaction within donor-conceived families, whilst influences from outside the family, for example societal ones, have been little researched. This study explored the societal experiences of individuals who build their family with the help of donor conception (i.e. donor-conceived families), specifically, where and how parents and society interact and the presence and influence of cultural beliefs and values regarding the family. Belgian (n = 89) and Swedish (n = 56) donor-conceiving parents completed an online-survey focusing on their experiences with societal perceptions and attitudes and behaviour and responses from friends, healthcare professionals and teachers. Descriptive and comparative statistical analyses were conducted. Results showed that donor-conceiving parents were challenged by societal representations, responses from friends, healthcare professionals and teachers, and cultural norms and values. Parents had to cope with lack of knowledge and understanding of donor-conceived families and colliding views on the relevance of genes in kinship. They needed to be able to explain and defend themselves, correct others and handle emotions and sensitivity when managing these interactions. Through psycho-education health-care professionals can help families anticipate potential reactions and manage societal responses by strengthening parents' coping mechanisms. These findings also call for awareness of the presence of cultural norms and values even when counsellor and patient share the same culture because counsellor and donor-conceiving parents can relate differently to (collide or conform with them) the shared cultural norms, which can impact on parents' experience.

Parenting stress and its association with perceived agreement about the disclosure decision in parents following donor conception.

INTRODUCTION: For many donor-conceiving heterosexual parents, the process of deciding whether and what to tell children about their genetic origin is challenging. We hypothesized that incomplete couple agreement about disclosure could be associated with parenting stress. The aim of the study was to investigate: (1) parenting stress levels among heterosexual parents of young children following gamete donation and (2) whether parenting stress is related to perceived agreement about disclosure of the donor conception to the children. MATERIAL AND METHODS: This study is part of the longitudinal multicenter Swedish Study on Gamete Donation and included a total of 213 heterosexual parents with children aged 1-4 years following oocyte donation (n = 103) and sperm donation (n = 110). Parents individually completed a questionnaire that included validated instruments on parenting stress (SPSQ) and relationship quality (ENRICH), as well as a study-specific measure on disclosure agreement. Multiple regression analysis was applied. RESULTS: Incomplete couple agreement on disclosure to the children was not statistically significantly associated with increased levels of parenting stress. Relationship satisfaction consistently and significantly accounted for variation in parenting stress levels, indicating that relationship satisfaction had a buffering impact on parenting stress. CONCLUSIONS: Parental stress does not appear to be negatively influenced by incomplete couple agreement about disclosure to children. As children grow up, reaching agreement about what to tell the child about the donor conception might become more relevant for couples' stress related to parenthood.

When 'sperm' becomes 'donor': transitions in parents' views of the sperm donor.

Abstract Little is known about recipients' views of their sperm donor. This study aimed to examine the possible transitions or consistencies in donor sperm recipients' (DSRs') view on the sperm donor over time. A longitudinal qualitative study of 19 Belgian heterosexual DSRs was undertaken. Interviews took place with both partners of the couple during pregnancy, at birth and 1.5-2 years after birth, and were analysed using a grounded theory approach. Recipients who intended to disclose exhibited a transition in their awareness of the donor from being of minimal importance to one who was increasingly seen as part of their family narrative. This was partly triggered by the offspring's life, remarks about resemblance and the socio-cultural context. The perceived position of the donor changed for most recipients from a threatening rival to a 'distractor'. This change was supported by the emerging father-child bond and the confidence that stemmed from it. These observations were applicable to those recipients who intended to disclose their donor conception; for those recipients who intended not to disclose, little or no transition was observed. This study describes and analyses the transitions and consistencies in recipients' views of the donor over different stages of the family life-cycle (pregnancy, birth, toddler stage) and could help the fertility clinics tailor their counselling to the specific stages of parenthood.

Body image and sexuality in adolescents after hypospadias surgery.

OBJECTIVE: Patients operated on for hypospadias often display a range of emotional and functional postoperative problems at an early age. This study explores the social, psychosocial and sexual development of adolescent boys operated on for hypospadias at an early age. PATIENTS AND METHOD: Ten boys between the ages of 11 and 18 years and an age-matched reference group of 10 boys completed three mailed questionnaires: the Child Behavior Checklist/4-18, the Youth Self Report, and the Self-Perception Profile for Adolescents. Data on body image and genital perception, and on social, psychosocial and sexual development were gathered by interview and standardized questionnaire. RESULTS: Internalizing or externalizing problems were not reported to be increased. Boys operated on for hypospadias had a significantly lower score on the Self-Perception Profile for Adolescents, Social Acceptance subscale. Fewer boys in the clinical group considered their penis to be normal or judged their penis as similar to that of friends. No difficulties were found regarding psychosocial or sexual development; there was however a tendency towards a more negative genital appraisal. CONCLUSION: Boys operated on for hypospadias appear to experience normal social, psychosocial and sexual development.