Donor conceived people’s rights in relation to access to donor and donor sibling information depend on when they were conceived. There have been significant legal changes made in 1991 and 2005, with more potential changes to come.
DCP Born Before August 1991
At this time, there was no legal regime in place to support those conceived via donor conception. However, you can apply to the Donor Conceived Register. This is a service funded by HFEA and run by the Liverpool Women’s NHS Foundation Trust with the objective of matching pre-August 1991 donor conceived people with donors and others who share the same donor. The Donor Conceived Register is a very small voluntary DNA register with less than 300 people on it so the chances of a match are very slim, but not impossible. The particular DNA technique used in this lab is better at matching maternal and paternal matches than it is to match siblings and matches are based on ‘probability.’The DCR team can support everyone involved with free and subsidised counselling sessions also.
DCP Born Between 1 August 1991 and 31 March 2005
The law surrounding donor conception for those born after 1991 is rooted in the Human Fertilisation and Embryology Act 1991. This established the state fertility regulator – the Human Fertilisation and Embryology Authority (HFEA) – and created a legal framework for donor conception.
Donor conceived people born during this time can access non-identifying information about their parents’ donor when they turn 16 by applying for information from the HFEA.
This may include a physical description of the donor (height, weight, eye and hair colour), the year and country of their birth, their ethnicity, whether they had any children at the time of donation and any additional information the donor chose to supply (occupation, religion, interests). The information provided by donors varies.
Donor conceived people can also find out if they have any donor conceived siblings through this application once they turn 16. This information will include: how many donor conceived siblings they have, their sex and their year of birth. Once they turn 18, they can join the HFEA’s Donor Sibling Link, which allows people conceived using a donor, to find their genetic siblings and share contact details.
If you and your partner are both donor conceived and are worried that you may be genetically related, you can also make a joint application to the HFEA to find out if you were conceived using the same donor: Donor-conceived people applying to find out if they are genetically related to their partner
DCP Post-2005
In 2005, the Human Fertilisation and Embryology Act 1991 was amended. This means that any donor conceived people born using gametes donated since The Act came into effect can access identifying information about their donor. Donation can no longer be done anonymously through UK licensed clinics.
Donor conceived people falling into this category can access the following information about their parents’ donor when they turn 18:
- Legal Name
- Date of Birth
- Last known address
There is no legal requirement for donors to update any of this information, or to facilitate any contact with the people born using their donation.
Before they turn 18, parents of donor conceived children can access non-identifying information about the donor at any time. This might include characteristics such as eye colour, hair colour and height. When the donor conceived person turns 16, they can access this information themselves.
Donor conceived people can also find out if they have any donor conceived siblings through this application once they turn 16. This information will include: how many donor conceived siblings they have, their sex and their year of birth. Once they turn 18, they can join the HFEA’s Donor Sibling Link, which allows people conceived with the help of a donor to find their genetic siblings and share contact details.
If you and your partner are both donor conceived and are worried that you may be genetically related, you can also make a joint application to the HFEA to find out if you were conceived using the same donor: Donor-conceived people applying to find out if they are genetically related to their partner
Other Information
What information can Donors legally access?
Donors have no access to identifying information about the people born from their donation. Donors active after August 1991 are able to know the number of children born from their donation, the gender of the children at birth and their year of birth if they apply to the HFEA.
If I donated anonymously, can I become identifiable at a later date?
Yes, Donors can opt to relinquish their anonymity with the HFEA at any point.
What if I take a DNA test and find my parents’ donor, my donor conceived siblings or people related to me through the donor?
There is no legislation surrounding this. Anyone is entitled to reach out to genetic relations on DNA sites, abiding by the site’s own policies, but no person is obliged by any law to facilitate such contact or provide any information.
Medical History
There is currently no legal mechanism for donor conceived people to find their genetic medical history, or for a donor to update their medical history. If the donor donated after 1991, they will have been screened and assessed for HIV, Hepatitis B and C, Human T Cell Lymphotrophic Viruses, Syphilis, Gonorrhoea and Chlamydia. You can find out more about this here: https://www.hfea.gov.uk/donation/finding-out-about-your-donor/finding-out-about-your-childs-donor-or-donor-conceived-siblings/finding-out-about-your-donor-s-personal-and-family-medical-history/
Legal Reform
There are campaigns for reform regarding the law surrounding donor conception and the Human Fertilisation and Embryology Act is currently under review. Donor Conceived UKs response to the HFEAs proposals to modernise fertility law can be found here: https://donorconceiveduk.org.uk/legal/uk-legislation/.