Astrid Indekeu, Clemens F M Prinsen, A Janneke B M Maas
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引用次数: 0
摘要
在世界范围内,人们越来越认识到获取祖先信息的重要性。越来越多的国家通过修改法律和自愿联系服务为获取这些信息提供便利。在荷兰,由国家资助的 Fiom KID-DNA 数据库于 2010 年建立,目的是促进因捐献辅助受孕而有遗传关系的人之间的信息和/或联系交流。截至 2021 年底,该数据库共登记了 846 名捐献者和 2355 名捐献受孕者。25%的捐献者与一个或多个捐献受孕者建立了联系,39%的捐献受孕者与捐献者档案建立了联系。Fiom 由具有专业资质的工作人员为受捐者、捐献者及其亲属提供从登记到联系的全程支持。在 10 多年的时间里,出现了一些挑战:国家资助的 DNA 数据库如何在商业 DNA 数据库领域发挥作用?
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?
期刊介绍:
Human Fertility is a leading international, multidisciplinary journal dedicated to furthering research and promoting good practice in the areas of human fertility and infertility. Topics included span the range from molecular medicine to healthcare delivery, and contributions are welcomed from professionals and academics from the spectrum of disciplines concerned with human fertility. It is published on behalf of the British Fertility Society.
The journal also provides a forum for the publication of peer-reviewed articles arising out of the activities of the Association of Biomedical Andrologists, the Association of Clinical Embryologists, the Association of Irish Clinical Embryologists, the British Andrology Society, the British Infertility Counselling Association, the Irish Fertility Society and the Royal College of Nursing Fertility Nurses Group.
All submissions are welcome. Articles considered include original papers, reviews, policy statements, commentaries, debates, correspondence, and reports of sessions at meetings. The journal also publishes refereed abstracts from the meetings of the constituent organizations.