HISTORY OF THE REGISTER

Find out our origins below

This register, formerly known as UK DonorLink (UKDL), was set up in 2004. It followed a historic court case brought in 2002 by Joanna Rose and EM, a child (who could not be named because of her age) who claimed that their human rights as donor conceived people were being breached by being denied access to information about their donor ([2002] EWHC 1593 (Admin)). There had also been a long running campaign by donor conceived people and their allies (including some parents and donors), professional organisations and academics to lift donor anonymity. The UK government agreed to fund the register service in recognition that anyone affected prior to legislation being introduced in August 1991 – which included Joanna Rose - would not benefit from proposals to lift anonymity as the law did not cover medical records kept prior to that. Donor anonymity was lifted prospectively in the UK for anyone conceived after April 2005 (but only covers those conceived between August 1991 and April 2005 if the donor comes forward to voluntarily re-register as willing to be identified).

 

The register was the first anywhere in the world to use DNA testing as the basis for looking for genetic links between those affected by donor conception. It covers anyone conceived in the UK pre August 1991 through donated sperm, eggs or embryos, their donors and half-siblings (including the non donor-conceived offspring of donors). It has also always provided professional support and counselling services for all registrants and in particular for those wishing to exchange information and, where desired, to have direct contact where results suggest the strong likelihood of a genetic relationship.

In 2013, the running of the register passed to the National Gamete Donation Trust and was renamed the Donor Conceived Register. In 2019 it transferred again, this time to the Liverpool Women's NHS Foundation Trust. Since 2018 it has been funded by the Human Fertilisation and Embryology Authority (the fertility regulator). The current register service uses the laboratory at King's College London to analyse DNA test results.

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