What are the regulations in the UK regarding accessing identifying information about egg, sperm, or embryo donors based on the date of donation? 

Most people conceived from an egg, sperm or embryo donation provided on or after 1 April 2005 will be able to submit a request to the HFEA to access some identifying information about their donor such as their name, date of birth and their last known address  

 

People conceived from a donation provided prior to 1 April 2005 can only access identifying information about their donor from age 18 if their donor has voluntarily re-registered to become identifiable. 

https://www.legislation.gov.uk/uksi/2004/1511/contents/made 

 

Will I definitely get identifying information if I was conceived after 2005? 

Unfortunately, the answer is no. Not all donor conceived people will be eligible to receive identifying information about their donor. There are several reasons for this, including a transitional period 2005-2007 during which clinics were able to use anonymous donations that they had previously collected, parents wanting a full genetic sibling for a child they already had, and patients being able to use embryos they had already created.” https://www.dcnetwork.org/i-am/donor-conceived-person/  

 

What are the implications of home DNA testing and matching websites for donor-conceived individuals? 

These websites can reveal the identity of donors or genetic siblings through matching services. Even if a donor-conceived person hasn't used such services, they might still be identified if a close relative has, by combining the matching information with publicly available data. 

 

How can the ConnecteDNA project help with this issue? 

The ConnecteDNA project, led by researchers from The University of Manchester aims to understand how people in donor conception utilise and are affected by the surge in online DNA testing. Direct-to-consumer genetic testing enables consumers to access genetic information directly through websites. ConnecteDNA investigates how this technology intersects with donor conception, particularly in creating new avenues for storing and sharing genetic connection information. 

 

 

Donor Conception Registers

 

What is the Donor Sibling Link (DSL) and how can it help donor-conceived individuals? 

The Donor Sibling Link (DSL) allows donor-conceived individuals over 18 to join and potentially connect with their donor-related siblings. - https://www.hfea.gov.uk/donation/finding-out-about-your-donor/donor-sibling-link-dsl/ 

• The Donor Sibling Link (DSL) pertains to the United Kingdom, and it is run by HFEA. 

• DSL allows donor-conceived adults in the UK to exchange contact details with people who share the same donor (donor-conceived siblings). 

• Eligibility criteria for joining DSL include being over 18 and having been conceived after 1 August 1991. 

• The DSL application process requires providing proof of identification and address. 

• Once eligibility is confirmed, registrants receive a unique PIN number to update their contact details and learn about potential sibling matches. 

 

What is the Donor Conceived Register and how can it help donor-conceived individuals? 

The Donor Conceived Register (DCR) is a service designed to match pre-August 1991 donors with donor-conceived individuals and others sharing the same donor. It is a voluntary contact register for donor-conceived individuals, donors, and half-siblings. - https://donorconceiveduk.org.uk/  

• Formerly UK DonorLink (UKDL), now operated by Donor Conceived UK. 

• Funding from Human Fertilisation and Embryology Authority since 2018. 

• DNA testing by King's College London and administered by Liverpool Women's NHS Foundation Trust. 

• It has a Private Facebook group renamed Donor Conceived UK. 

 

What is the DCPData and how can it help donor-conceived individuals? 

DCPData is a user-friendly, customisable dashboard designed for Donor-Conceived Persons and Recipient Parents to connect with genetic family members worldwide and gain insights into genetic health information - https://www.dcpdata.org/ 

• DCP Data facilitates connections among donor-conceived individuals based on shared donor information. 

• The platform offers global accessibility and affordability. 

• DCP Data differentiates itself by focusing on aggregating health information within sibling pods, rather than providing individualised health reports. 

• Users can compare health statistics within pods to understand trends and inform healthcare decisions. 

 

I am a donor-conceived person, where can I seek support? 

Donor Conceived UK – A new peer-led charitable organisation to represent donor conceived people, donors and others affected by donor conception practises in the UK 

 

All Things Donor Conception by Hayley King 

 

Donor Conceived Register (DCR) - Liverpool Womens NHS Foundation Trust 

 

Finding out about your donor | HFEA 

​

See the Support and Further Resources page for more. 

 

Where can I find people on social media that have gone through a similar journey to me? 

 

• Laura High shares her perspective as a donor-conceived person via sperm donation on her website Laura High Five and her Link Tree here. She provides insights and resources related to this journey. 

• Donor Dylan, who founded the DCP Data registry, offers another perspective from the donor side. His website Donor Dylan discusses issues surrounding donor conception, including American companies' handling of the process and his extensive experience with over 97 biological children. Both creators did a podcast episode together in which they discussed their experiences. https://www.youtube.com/watch?v=MzahNx4rTyg 

• For more personal stories of donor-conceived individuals, visit Donor Conceived UK. Here, you'll find a variety of firsthand accounts that provide insight into the unique experiences and perspectives of those who are donor conceived. These stories offer valuable understanding and connection within the donor-conceived community.  - https://donorconceiveduk.org.uk/donor-conceived-information/dcp-personal-stories/ 

 

Active conversations in the DCP space 

 

This DCUK report emphasises amplifying the voices of donor-conceived individuals to improve support, expand resources, and influence policy, research, and media. It advocates for a peer-led charitable organisation to represent and support donor-conceived people in the UK, addressing their unique challenges and advocating for their rights. The organisation aims to raise awareness, educate the public, and push for policy reforms, including the right to know genetic history. This effort seeks to provide a platform for sharing experiences and fostering positive outcomes for donor-conceived individuals. The full report and its findings and recommendations can be found here Jan 2024 FINAL DCRRP Consultation Report (donorconceiveduk.org.uk)  

 

Explore the ethical considerations of embryo donation in Olivia's thought-provoking blog post. She argues for completely open and transparent practices, emphasizing the importance of genetic connections for donor-conceived individuals. Read the full discussion on how these principles could shape the future of donor conception here - If anything other than completely open embryo donation is wrong, can egg and sperm donation be far behind? | Olivia's View (wordpress.com) 

 

In "Children's rights and donor conception: What next?", Dr. Katherine Wade discusses potential changes to UK law on donor anonymity amidst rising genetic testing use. Children's rights and donor conception: What next? (progress.org.uk) 

 

At an historic United Nations event on November 19, 2019, donor-conceived and surrogacy-born individuals shared their compelling stories, advocating for transparency and rights recognition. A recording of the event can be accessed here - https://www.wearedonorconceived.com/guides/donor-conceived-people-present-at-the-united-nations/ 

 

Further reading:  

1680a97134 (coe.int) - Access of Persons Conceived by Gamete Donation to Information on Their Origins 

 

Anonymous gamete donation and Article 8 of the European Convention on Human Rights: The case for incompatibility - Andrea Mulligan, 2022 (sagepub.com)