FAQs about the HFEA
On this page:
- Why was the HFEA set up?
- What is the role of the HFEA?
- What are the HFEA's licensing responsibilities?
- What does the HFEA not do?
- How are HFEA Members appointed?
- What is the HFEA Code of Practice?
- What is the HFEA Register?
- Why is there a Register?
- What information is held on the Register?
- Who is allowed to have information from the Register?
- How can I get information from the Register?
Why was the HFEA set up?
The 1984 report of the Committee of Inquiry into Human Fertilisation and Embryology (the Warnock Report) recommended the setting up of a body to regulate human embryo research and assisted reproduction treatment. As a result, the HFEA was established in August 1991, following the passing of the Human Fertilisation and Embryology Act 1990 (HFE Act). It was the first statutory body of its type in the world.
What is the role of the HFEA?
The HFEA licenses and monitors:
- fertility clinics that carry out in vitro fertilisation (IVF) and donor insemination
- centres undertaking human embryo research
- the storage of gametes (eggs and sperm) and embryos.
It provides the following formal guidelines and records:
- a Code of Practice, which gives guidelines to clinics about the proper conduct of HFEA-licensed activities
- three formal registers of information about donors, fertility treatments and children born as a result of those treatments.
The HFEA also fulfils the following functions as an information provider:
- provides relevant advice and information to patients, donors and clinics
- reviews information about human embryos, and the provision of treatment services and activities governed by the HFE Acts 1990 and 2008
- monitors any subsequent developments in this area and, where appropriate, advises the Secretary of State for Health on developments in these fields.
What are the HFEA's licensing responsibilities?
The HFEA undertakes these licensing activities:
- issues treatment, storage, research and non-medical testing licences to centres
- renews licences on an annual basis
- defines and promotes good clinical practice and high ethical standards
- ensures clinics comply with the requirements of the 1990 and 2008 HFE Acts, and the European Tissues and Cells Directive.
What does the HFEA not do?
The following should help to clear up some common misconceptions about the HFEA:
- we are not a pressure group
- we do not regulate all infertility treatments (only those using sperm, eggs or embryos outside the body)
- we are not an ombudsman
- we are not involved in funding for treatment
- we do not regulate the cost of fertility treatment
- we are not a research body.
We also only have a limited role in complaints about licensed fertility clinics.
How are HFEA Members appointed?
HFEA Members are appointed by UK Health Ministers in accordance with the guidance from the Commissioner for Public Appointments (the ‘Nolan' Guidelines). The Members decide on HFEA policies.
To ensure that the HFEA has an objective and independent view, the HFE Act requires that the Chair, Deputy Chair and at least half of the HFEA Members are neither doctors nor scientists involved in human embryo research or providing infertility treatment.
HFEA Members bring to the HFEA a broad range of expertise, from medicine to law and religion to philosophy.
What is the HFEA Code of Practice?
The HFEA has a statutory duty under the HFE Act to produce a Code of Practice that gives guidelines to clinics about the proper conduct of HFEA-licensed activities. This Code of Practice is regularly reviewed and amended to keep up to date with rapidly changing clinical and other practice in the field of assisted reproduction and research.
The Code of Practice is designed for use by service providers and research centres, but also gives guidance that patients may find of interest.
What is the HFEA Register?
The HFEA has a statutory duty to collect information about licensed treatments and their outcomes. We maintain a Register of information compiled from data provided by licensed clinics.
- The HFE Act (and other legislation)
- European Cells and Tissues Directive
- Code of Practice
- For the donor conceived
Why is there a Register?
The aim is to give people conceived through donation an opportunity to learn about their genetic background and to help avoid biological relatives inadvertently marrying or having children. The act came into effect on 1 August 1991.
The Register holds information on patient and partner registration at a clinic, donors, donor gamete (insemination) treatments, in vitro fertilisation (IVF), embryo creation, embryo use and pregnancy outcomes.
Until recently, according to the law, the identity of those donating sperm, eggs and/ or embryos must remain confidential, unless the individual undergoing treatment already knows the donor(s). With this privacy in mind, certain information has been routinely collected for the Register since August 1991:
- identifying details of all individuals donating at HFEA-licensed clinics
- some non-identifying information about donors
- details of patients treated using gametes (sperm or eggs) provided by donors
- the outcome of fertility treatments - including the birthday and sex of a donor-conceived child born to a named patient.
The amount of non-identifying information available varies as it was not initially compulsory for donors to provide it, but some individuals gave a description of themselves, stated whether they had children, or listed their interests.
Some of the following non-identifying information about donors will be available to people conceived with gametes donated between 1991 and July 2004:
- physical description of donor (height, weight, eye and hair colour, skin colour)
- year and country of the donor's birth
- donor's ethnic group
- whether the donor had any children
- any other details the donor may have chosen to provide, such as their occupation, religion, interests and skills
Additional information collected from July 2004:
- donor's parents ethnic group
- whether the donor was adopted
- donor's marital status
- how many children the donor already had (if applicable) and the gender of those children
- details of donor screening tests and medical history
- a goodwill message
Please note that not every donor will have provided all types of information listed above.
Who is allowed to have information from the Register?
The 1990 Act stipulates who can have information from the Register. People over the age of 18 (or younger if they are planning to marry) who were conceived after August 1991, can apply to the HFEA for information to find out whether they were conceived using donated sperm, eggs or embryos and, if so, if they are related to their potential partner. The first donor conceived individuals covered by the HF&E Act will reach the age of 18 in 2009.
Donor conceived people over 18 will be entitled to request information available about their donor (see list of possible non-identifying information above).
How can I get information from the Register?
Those who are entitled to information from the HFEA Register should contact the HFEA by email at email@example.com fill in an application form and return it to the HFEA. We will then carry out a search for the relevant information.
Page last updated: 14 April 2009