HFEA to 'Open the Register' for donors, the donor-conceived and for researchers
28 September 2009
Donor conceived people and donors will have new rights to access information about themselves held on the HFEA register from Thursday 1 October.
The new amended Human Fertilisation and Embryology Act 1990, the bulk of which comes into effect on 1 October, will open the HFEA’s register of data – a comprehensive collection of information about fertility treatments that have been carried out over almost two decades.
Donor conceived children aged sixteen or over will be able to ask for non-identifying information about their donor and, when they are eighteen, register details about themselves on a new sibling contact register.
Donors will also have a right to find out if their donation has been successful; the number of children born as a result of their donation, their sex and year of birth.
HFEA chair Prof Lisa Jardine said:
“This is a real step forward that matters a great deal to those concerned. It is vitally important that donor conceived people can access information about their own, personal genetic origins if they wish to do so. The new Act enshrines their right to this information and the HFEA has put systems in place to ensure that applicants know what information they can obtain and how to go about accessing it.”
The new Act also allows HFEA to open its Register to researchers from recognised institutions. They will be able access data about fertility treatments carried out in the UK since 1991.
Patients having treatment on or after 1st October will be asked to consent to this use of their treatment details. People whose treatment took place before 1 October will be able to opt out of having their information included for release. Treatments involving donated sperm or eggs will not be included.
Professor Lisa Jardine, Chair of the HFEA, said:
“The HFEA holds a wealth of information about fertility treatments. This is an invaluable resource and a very exciting opportunity for researchers. Very few research studies into the long term effects of fertility treatment have been carried out and this is an area which cries out for more examination by researchers."
Researchers have already shown an interest in using detailed HFEA data for research. The final details of releasing this information are subject to regulations which are currently being consulted on by the Department of Health. The regulations will go before Parliament early next year.
However, an anonymised register of data will be available for research use later this year.
Notes to editors
- The HFEA has been recording information about in vitro fertilisation (including treatments using donor eggs and sperm) and donor insemination since it was established on 1st August 1991. Clinics must submit information about treatments to the HFEA and they remain responsible for the data they supply.
- Where clinical and social researchers wish to request identifying information from the HFEA Register, they will have to submit a detailed application that will be rigorously reviewed and considered before they are given access to only the specific data that they need.
- People who are treated on or after 1st October will be asked to consent to use of their identifying data for research. Clinics will report a patient’s consent or refusal to consent as part of the information they must provide to the HFEA. Those who were treated before that date can contact the HFEA to opt out.
- The HFEA will be publishing an anonymised version of its register later this year, with all patient identifying information (name, address etc) removed. This statistical data will give researchers a fascinating, unique data set that can offer an insight into the progress of fertility treatment over almost two decades.
- The new legislation enables the Authority to establish a Voluntary Sibling Contact Register, to facilitate donor-conceived individuals to make contact with their donor-conceived siblings, from the age of 18, on the basis of mutual consent.
- The HFEA is the independent regulator for IVF treatment and embryo research. Our role is to protect patients and the public interest, to drive improvement in the treatment and research sectors and to provide information to the public and policymakers about treatment and research.
- The HFEA was set up in August 1991 as part of the Human Fertilisation and Embryology Act 1990. The HFEA’s principal tasks are to license and monitor clinics that carry out in vitro fertilisation (IVF), artificial insemination (AI) and human embryo research. The HFEA also regulates the storage of gametes (eggs and sperm) and embryos.
Page last updated: 05 October 2009