One of the final implementation stages of the HFEA takes place on 6 April 2010 when the Human Fertilisation and Embryology (Disclosure of Information for Research Purposes) Regulations 2010 (regulations) are due to come into force. The aim of the regulations is to allow relevant research bodies within the United Kingdom who cannot approach individuals directly, to apply to the HFEA for the disclosure of information concerning certain individuals who have either been conceived as a result of an assisted fertility process or those who have undergone such process. There will be a charge made for access to this information based on the time taken by the HFEA to collate and prepare the relevant information for each applicant.
The information for which applicants can apply for disclosure is information relating to
- the provision to an identifiable person of fertility treatment services other than basic partner treatment;
- the procurement or distribution of reproductive cells collected in the course of providing non-medical fertility treatment for an identifiable individual;
- the retention of reproductive cells or embryos taken from identifiable individuals; and
- the use of reproductive cells or embryos from identifiable individuals.
The regulations set out a list of exceptions to what can be disclosed and the exceptions are dependent on when the information was recorded by the HFEA. Of most importance, information cannot be disclosed if the individual concerned has not consented to disclosure for research purposes.
The application process is set out in the regulations and applications may be turned down on the following basis:
- no research ethics committee has given a favourable view of the project for which the applicant requires the information to be disclosed;
- the HFEA does not consider that the information requested is necessary for the project;
- an individual could be identified from the information if it was disclosed and there are other means of achieving the aim of the research project (taking into account cost and available technology); or
- the security arrangements which an applicant has put in place are insufficient.
The HFEA also has the right to visit an applicant’s premises to ensure that it complies with the regulations. The regulations can accessed here.