Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders

Gilman, Leah; Redhead, Caroline; Hudson, Nicky; Fox, Marie; Nordqvist, Petra; MacCallum, Fiona; Kirkman-Brown, Jackson; Frith, Lucy

doi:10.1016/j.rbmo.2023.103421

Cited by 8 publications

(1 citation statement)

References 25 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…At the same time, however, Grace and Daniels (2007) point to an increasing discourse of the significance of genetic inheritance, partly for medical reasons and, also as de Lacey et al (2015) point to, a ‘welfare of the child’ discourse (in some jurisdictions reinforced through legislation and policy), which highlights the role of access to genealogy as central to DCP identity and adjustment. Furthermore, the increased use and availability of direct-to-consumer DNA testing may not only encourage parental disclosure to avoid unplanned discovery but also make visible genetic connections ( Darroch and Smith, 2021 ; Gilman et al , 2024 ), potentially underscoring their importance and shaping ethical and biomedical discourses. Parents thus negotiate parenthood in a context in which separating out the various aspects of reproduction and parenting have become more common, and yet in which genetic information is valued.…”

Section: Discussionmentioning

confidence: 99%

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

Duff,

Goedeke

2024

Human Reproduction Update

View full text Add to dashboard Cite

BACKGROUND 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. OBJECTIVE AND RATIONALE 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? SEARCH METHODS 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. OUTCOMES 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. WIDER IMPLICATIONS 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.

show abstract

Section: Discussionmentioning

confidence: 99%

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

Duff,

Goedeke

2024

Human Reproduction Update

View full text Add to dashboard Cite

show abstract

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

Bauer,

Meier-Credner

2024

SN Soc Sci

View full text Add to dashboard Cite

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.

show abstract

Direct-to-consumer DNA testing: the perspectives and experiences of donor conceived young adults in the UK

Zadeh

2024

Reproductive BioMedicine Online

View full text Add to dashboard Cite

Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders

Cited by 8 publications

References 25 publications

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

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

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

Direct-to-consumer DNA testing: the perspectives and experiences of donor conceived young adults in the UK

Contact Info

Product

Resources

About