Diya Porwal, Giselle Newton, Julia Mansour, Lisa Dive
{"title":"Stakeholders' experiences and perspectives of reproductive genetic carrier screening in gamete donation: a scoping review.","authors":"Diya Porwal, Giselle Newton, Julia Mansour, Lisa Dive","doi":"10.1093/humrep/deaf128","DOIUrl":null,"url":null,"abstract":"<p><strong>Study question: </strong>What is known about stakeholders' experiences and perspectives with reproductive genetic carrier screening (RGCS) in gamete donation?</p><p><strong>Summary answer: </strong>RGCS has impacted donors' autonomy, recipients' decision-making, healthcare professionals' confidence, and third-party service providers' management of the donor pool.</p><p><strong>What is known already: </strong>Growing acceptance of diverse family structures and advances in RGCS technology have driven demand for RGCS in gamete donation, yet its clinical, social, and ethical implications remain poorly understood.</p><p><strong>Study design, size, duration: </strong>A scoping review of four databases (Medline, Embase, CINAHL, and Scopus) with citation searching was conducted to identify original research, position statements, and conference abstracts published in English with an unrestricted date range.</p><p><strong>Participants/materials, setting, methods: </strong>Of the 470 studies identified, 427 were excluded during title and abstract screening and 14 during full-text review based on inclusion and exclusion criteria. For the 29 studies included, data were extracted in excel, and NVivo was used to code data and derive themes.</p><p><strong>Main results and the role of chance: </strong>Four themes regarding stakeholders' experiences and perspectives with RGCS in gamete donation were derived: (i) RGCS presented new challenges regarding donor autonomy, informed consent, and result disclosure; (ii) recipients valued RGCS but decision-making was also shaped by cost, time constraints, and genetic literacy; (iii) healthcare professionals supported donors and recipients with RGCS, yet felt unskilled and inexperienced; and (iv) third-party service providers managed donor availability challenges from increased carrier detection through RGCS.</p><p><strong>Limitations, reasons for caution: </strong>This review was restricted to articles published in English. A range of terms were used to describe RGCS; thus, it is possible that not all relevant articles were identified in the search. Most included studies were conducted in the USA within a private medical system that permits compensation for gamete donors, which may shape the results and relevance to other countries with differing healthcare systems.</p><p><strong>Wider implications of the findings: </strong>Our findings suggest that the growing demand for RGCS technology may impact donors' willingness to donate and the availability of donor gametes. Third-party service providers may refine their exclusion criteria to include donors with a positive carrier status in the donor pool or increase the involvement of recipients in donor selection. Healthcare professionals working in gamete donation require more guidance and training on RGCS. Further research is required to establish a more robust evidence base regarding how RGCS impacts stakeholders and to establish clearer guidelines regarding RGCS in gamete donation.</p><p><strong>Study funding/competing interest(s): </strong>This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.</p><p><strong>Registration number: </strong>n/a.</p>","PeriodicalId":13003,"journal":{"name":"Human reproduction","volume":" ","pages":""},"PeriodicalIF":6.0000,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Human reproduction","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/humrep/deaf128","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"OBSTETRICS & GYNECOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Study question: What is known about stakeholders' experiences and perspectives with reproductive genetic carrier screening (RGCS) in gamete donation?
Summary answer: RGCS has impacted donors' autonomy, recipients' decision-making, healthcare professionals' confidence, and third-party service providers' management of the donor pool.
What is known already: Growing acceptance of diverse family structures and advances in RGCS technology have driven demand for RGCS in gamete donation, yet its clinical, social, and ethical implications remain poorly understood.
Study design, size, duration: A scoping review of four databases (Medline, Embase, CINAHL, and Scopus) with citation searching was conducted to identify original research, position statements, and conference abstracts published in English with an unrestricted date range.
Participants/materials, setting, methods: Of the 470 studies identified, 427 were excluded during title and abstract screening and 14 during full-text review based on inclusion and exclusion criteria. For the 29 studies included, data were extracted in excel, and NVivo was used to code data and derive themes.
Main results and the role of chance: Four themes regarding stakeholders' experiences and perspectives with RGCS in gamete donation were derived: (i) RGCS presented new challenges regarding donor autonomy, informed consent, and result disclosure; (ii) recipients valued RGCS but decision-making was also shaped by cost, time constraints, and genetic literacy; (iii) healthcare professionals supported donors and recipients with RGCS, yet felt unskilled and inexperienced; and (iv) third-party service providers managed donor availability challenges from increased carrier detection through RGCS.
Limitations, reasons for caution: This review was restricted to articles published in English. A range of terms were used to describe RGCS; thus, it is possible that not all relevant articles were identified in the search. Most included studies were conducted in the USA within a private medical system that permits compensation for gamete donors, which may shape the results and relevance to other countries with differing healthcare systems.
Wider implications of the findings: Our findings suggest that the growing demand for RGCS technology may impact donors' willingness to donate and the availability of donor gametes. Third-party service providers may refine their exclusion criteria to include donors with a positive carrier status in the donor pool or increase the involvement of recipients in donor selection. Healthcare professionals working in gamete donation require more guidance and training on RGCS. Further research is required to establish a more robust evidence base regarding how RGCS impacts stakeholders and to establish clearer guidelines regarding RGCS in gamete donation.
Study funding/competing interest(s): This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
期刊介绍：
Human Reproduction features full-length, peer-reviewed papers reporting original research, concise clinical case reports, as well as opinions and debates on topical issues.
Papers published cover the clinical science and medical aspects of reproductive physiology, pathology and endocrinology; including andrology, gonad function, gametogenesis, fertilization, embryo development, implantation, early pregnancy, genetics, genetic diagnosis, oncology, infectious disease, surgery, contraception, infertility treatment, psychology, ethics and social issues.
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