Page URL: https://www.progress.org.uk/witmt2glossary

Glossary

This glossary forms part of the Progress Educational Trust (PET) project 'When It Takes More Than Two', supported by the Wellcome Trust.

Altruism
The principle of acting in the interest of others. In the context of gamete donation, this means the donor does not expect to receive a reward, financial or otherwise.

Anonymous donor
A gamete donor whose identity is not known to the recipient or to the resulting donor-conceived person. Most gamete donors who donated before 1 April 2005 at licensed clinics in the UK are anonymous. Some anonymous donors have chosen to reregister as identifiable donors.

Conditionality
Being subject to conditions. In the context of gamete donation, this means the donor has placed conditions on the use of gametes - for example, specifying that gametes should not be used by a single woman.

Donor code
An administrative reference number used by clinics to track the use of an individual donor's eggs or sperm. Some people use these codes to help them find genetic siblings, using contact networks and groups that aim to support donor-conceived people, their families, and donors. Whereas the USA's Donor Sibling Registry facilitates and confirms connections primarily by using donor codes, neither UK clinics nor the Human Fertilisation and Embryology Authority are currently permitted to release such codes. Instead, people who were donor-conceived in the UK can seek siblings via Donor Sibling Link.

Donor Conceived Register
The new name by which the UK DonorLink voluntary information and contact register (the Voluntary Register) will be known as of 1 April 2013, when it will be administered by the National Gamete Donation Trust as part of the National Gamete Donation Service.
Information about the transition to the Donor Conceived Register can be found here.

Donor Conception Network
A UK charity established in 1993 which supports donor-conceived people, their families, and people considering or undergoing donor conception treatment. It is made up of a supportive network of 1,600 families, based mainly in the UK.
See its website.

Donor information form
A form which must be completed for all UK gamete donors, requiring information to confirm the donor's identity, physical characteristics, ethnic background and medical history. The donor can write a personal description (pen portrait/picture), provide their reasons for donating, and add a goodwill message. The non-identifiable information contained in this form can, upon request, be made available to patients requiring donation, to parents of children conceived with the donor's gametes, and to children conceived with the donor's gametes (once the latter reach the age of 16). When children conceived with the donor's gametes reach the age of 18, the full content of this form can be made available to them on request.
See the relevant form (.pdf 175KB).

Donor Sibling Link
A service established by the Human Fertilisation and Embryology Authority in 2010, which enables donor-conceived people aged 18 or over to consent to be put in touch with their genetic siblings.
Information about the service can be found here.

Donor Sibling Registry
A US-based non-profit organisation established in 2000 which facilitates searching for, and establishing contact between, people who are genetically related as a result of gamete donation. It is open to a global membership of donor-conceived people, their families, and donors. It facilitates and confirms connections primarily by using donor codes given to recipients by fertility clinics.
See its website.

Epigenetics
The science of enduring (but ultimately reversible) changes in the pattern of gene activity, during embryo development and beyond, that do not involve alteration of the DNA sequence. These changes occur in response to conditions within the embryo and more generally.

Gamete
A reproductive cell, either the male sperm or the female egg.

Gene
The basic biological unit of inheritance. Genes are made out of DNA, and most of them are coded instructions for making proteins. Other genes make molecules that control gene activity.

Genetic predisposition
Increased probability (compared to the general population) of developing a disease, due to the presence of one or more genetic mutations.

Genetic counselling
Information and advice given to patients affected by, or at risk of, a genetic condition. An explanation of risks and options may include the findings of specific genetic tests.

Goodwill message
An optional section contained in the UK Donor information form, in which gamete donors are asked to write 'a goodwill message for anyone born as a result of your donation'. The guidance on the form recommends that donors complete this, 'as the information you provide can help parents tell children about their origins and answer some questions a donor-conceived person may have'.
See the relevant form (.pdf 175KB).

Green form
A form which UK gamete donors are required by law to complete, documenting their consent to the storage of their gametes. The form also documents donors' consent to the storage period, to the number of families who may have children using the donation, what should happen to the gametes in the event of death or mental incapacity, and any conditions placed upon the donation by the donor.
See the form for egg donors (.pdf 827KB)
See the form for sperm donors (.pdf 840KB).

Heritability
The extent to which a particular trait is inherited. Studies of heritability typically estimate the proportion of observed variation in a particular trait (for example, height) that can be attributed to inherited genetic factors in contrast to environmental ones.

Human Fertilisation and Embryology Authority
A UK non-departmental public body established by an Act of Parliament in 1990, which regulates treatment using eggs and sperm, and treatment and research involving human embryos. It sets standards for, and issues licences to, fertility treatment and embryo research centres.
See its website.

Identifiable donor
A gamete donor whose identifiable information (including name and last known address) is made available on request to children conceived from their donation, once those children reach the age of 18. By law, all donors who donated after 1 April 2005 in the UK are identifiable. Donors who donated before this date may choose to reregister as identifiable.

Known donor
A gamete donor whose identity is known to the recipient from the outset.

Mendelian
A pattern of inheritance displayed by a trait under the control of one gene, akin to the patterns of inheritance described by the nineteenth-century scientist Gregor Mendel.

National Donation Strategy Group
A group established by the Human Fertilisation and Embryology Authority in 2012, with three core objectives - to increase awareness of donation and the information that donors receive, to improve the 'customer service' that donors receive when they contact clinics, and to help donors provide better information about themselves for future families.
Information about the group can be found here.

National Gamete Donation Service
A programme providing national leadership and profile for gamete donation issues. From 1 April 2013, its main responsibilities will be to manage and promote the Donor Conceived Register (formerly the UK DonorLink Voluntary Register), and to provide a national focus for the promotion of gamete donation.

National Gamete Donation Trust
A UK charity established in 1998 to raise awareness of, and seek ways to alleviate, the national shortage of gamete donors. The charity provides support and information to donors and recipients of donated eggs, sperm and embryos.
See its website.

Screening
Assessing a group of people to determine who among them is at particular risk of having or transmitting a disease or health problem. In the context of UK gamete donation, screening of gamete donors is legally required, in order to assess the risk presented by HIV and Hepatitis B and C. Additional tests may be required depending on the donor's circumstances, in accordance with current professional guidelines.

UK DonorLink
A voluntary information and contact register (the Voluntary Register) established in 2003 to enable donor-conceived people, their donors and their half-siblings to exchange information and - where desired - contact one another. The register is for anyone over 18 who donated or was donor-conceived in the UK prior to August 1991.