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

Abstract

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?

Keywords:

• DNA
• donor-conceived people
• donors
• support
• voluntary register
• donor-linking

Acknowledgements

The authors would like to thank all the staff involved in the administrative, laboratory and counselling aspects of the Fiom KID-DNA database. We thank Dr. J van den Ouweland (Canisius-Wilhelmina Hospital, Nijmegen) for his critical reading of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 The BADOK II study was funded by the Dutch government [ZONMWProjectnumber 854020001] and focussed on the need for support around the meeting of donor and donor-conceived people, and whether currently offered support meets this need, amongst other issues. A mixed methodology, using in-depth interviews and questionnaires, was applied. Qualitative data showed that the majority of both donor-conceived people and donors experienced support as positive and that the support they received met their needs. Support was appreciated not only before a meeting but during and after a meeting, as well. Counsellors’ knowledge regarding donor conception was valued.