Human Fertilisation and Embryology Act 1990 (UK) and the Human Fertilisation and Embryology Act 2008 (UK).
Access to information in the United Kingdom by donor conceived people depends upon when they were conceived – pre or post 1991 (which marked the commencement of the Human Fertilisation and Embryology Act) and subsequent to 2005 after which anonymous donations may no longer take place.
The primary locations that may assist donor conceived people seeking information about their donor (or siblings) are
- the Human Fertilisation and Embryology Authority (HFEA),
- The UK Donor Conceived Register, or
Rules Around Releasing Donor Information – for post 1991 conceptions
The Human Fertilisation and Embryology Authority has kept records of all births that have resulted following assisted reproductive treatments in all licensed UK fertility clinics since its inception—that is, 1 August 1991.
The estimated number of donations (by the HFEA) is currently 800-1000 donors per year, with a higher number of female donors (65%) than male donors (35%).
a) Information available about donors:
For people conceived between 1 August 1991 – 1 April 2005
The HFEA collected the following information about donors:
- their physical description (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
- any additional information the donor choose to supply such as occupation, religion, interests and a brief self-description.
People conceived using a donor between 1991 and 2005 may access this non-identifying information when they turn 16 (noting however that not every donor provided all of this information and that the HFEA advises ‘relevant counselling’ prior to making an inquiry so that information seekers are able to cope with finding less information than they desire).
Some people conceived between these dates may also be able to access ‘identifying information’ (i.e. a name and address) of the donor at age 18. This depends upon the donor having ‘re-registered’ with the HFEA as identifiable. To date approximately 100 donors have done so – without any public campaign to encourage them.
For people conceived after 1 April 2005
The information collected by the HFEA regarding donors after 1 April 2005 is more extensive and includes identifying information. When donor conceived people conceived after 1 April 2005 reach the age of 16 they will be able to access the following information about their donor:
- physical description (height, weight, eye and hair colour) if provided by the donor
- the year and country of birth
- whether the donor had any children, how many and their gender
- marital status
- medical history
- a goodwill message to any potential children, (if provided)
When the donor conceived person reaches the age of 18 they will also be able to obtain identifying information (the donor’s name, date of birth and last known address).
NB. There was a ‘window’ between 1 April 2005 and 1 April 2006 where anonymous donor gametes that was stored could still be used. In addition, people may store anonymous donor gametes for up to 10 years to conceive a genetically related sibling for a child already born. People conceived using these ‘anonymous’ gametes, even if post 2005, do not have similar access to identifying information.
b) Information available about genetically related siblings
Donor conceived people are also entitled to anonymous information about any donor-conceived genetically related siblings they may have from age 16. This excludes information about the donor’s own legal/natural children.
This information consists of:
- year of birth
- details on the number of donor-conceived siblings you have
- the sex of your siblings.
From 18 years of age donor conceived people may find out identifying information about any donor-conceived genetic siblings, if both sides consent. The information includes contact details and information on how that person would like to be contacted, rather than biographical information.
A voluntary donor sibling registry has also been established by the HFEA. From 2010, when donor-conceived people reach the age of 18, they have been able to place their contact details on a voluntary sibling contact register called Donor Sibling Link, administered by the HFEA. The HFEA states that they will facilitate the exchange of contact details between siblings who consent to be on this register. Consequently, it will be possible for donor-conceived adults to trace their siblings, on the basis of mutual consent, through the voluntary sibling contact register. It is not possible for parents to trace their child’s siblings through the voluntary contact sibling register.
Two people who intend to get married may contact the HFEA register and inquire whether they are genetically related.
c) Information available to recipient parents
Parents are granted a discretionary right of access to information by the authority.
Only information which could not, on its own or in conjunction with any other information, be used to trace or identify the donor will be given.
Depending on what information has been provided, parents may get some or all of the following:
- a physical description of the donor (height, weight, eye and hair colour)
- the year and country of the donor’s birth
- the donor’s ethnicity
- whether the donor had any children at time of donation, how many and their gender
- the donor’s marital status
- the donor’s medical history
- a goodwill message from the donor to any potential children
The UK Donor Conceived Register – Pre 1991 conceptions (A voluntary register)
For people conceived prior to 1991 there was no central repository of donor information. They can however attempt to seek information about, and contact with, their donor or donor sibling(s) through a voluntary organization, the UK Donor Conceived Register (formerly known as UK DonorLink).
The former UK DonorLink was the world’s first DNA-based voluntary register service for donor conceived adults, having opened in 2004.
The now UK Donor Conceived Register is available to people throughout the UK and is intended for anyone who donated in a UK clinic or was conceived following treatment in a UK clinic before August 1991. However because of storage and distribution practices it is possible that donor-conceived born until December 1992 could find donor-conceived half-siblings or their donor on the register.
A link to the UK Donor Conceived Register can be found here: http://www.donorconceivedregister.org.uk/
Obtaining information through Clinics
For those conceived pre-1991 there also exists the option of contacting the treating clinic to ask them to provide non-identifying information. However, this has not proved particularly fruitful: many clinics have closed down, and/or destroyed their records.