Disclosing identifying information to researchers
The information we hold
In the course of treatment, storage or donation, HFEA licensed centres collect information about patients, their partners and donors. Some of this information comes to us at the HFEA and is recorded on our Register.
This information may include personal data such as:
- your date of birth
- the number of embryos transferred in treatment
- whether treatment led to pregnancy
How the information can be used
We use the Register to provide some researchers with anonymous information (information that cannot reveal your identity).
Since 1 October 2009, researchers have been able to apply to access information from the Register that identifies patients and partners receiving treatment using their own sperm, eggs or embryos and, since 1 August 2012 information that identifies patients and partners receiving treatment that uses donated sperm, eggs or embryos, and donors.
This identifying information is a very valuable resource for researchers and could be used to carry out medical and social research. It could, for example, be used to investigate the safety and efficiency of fertility treatments, develop new treatment and storage techniques and study the effect of national policies, such as the HFEA multiple births policy.
The main use of identifying information is to link fertility treatment data with other healthcare records for example, to see whether IVF affects the health of women or their children. A minimum amount of identifying information (e.g. one or two identifiers) would be needed to perform the linkage.
How does this affect you?
The value of research
The HFEA has welcomed the historic shift represented by the new statutory provisions set out in new legislation. These will enable valuable research to be carried out using HFEA Register data, and from linking this to other datasets. We believe that powerful social and health benefits can be derived from such work.
We are aware that there other views. Some have argued that conducting research on HFEA Register data where there is no explicit consent from the patients constitutes a breach of trust. Others have pointed out that, going forward from October 2009 onwards, collecting consents for disclosure from patients and answering their questions in a helpful and informed way is an additional administrative burden for fertility clinics.
The HFEA is fully aware of the burden this new consent imposes on clinic staff and has done everything it can to help the sector adapt to the new legislative requirements set out by Parliament.
- held seminars with the sector
- tested consent forms with clinic staff and clinicians
- drafted patient information which should help staff have conversations with patients about consent to research.
We believe that the extra burden, which makes good research possible, is justified given the significant burden data collection and verification already presents to the sector.
We are also aware of the sensitivity of the data we hold and the desire of many fertility patients and donors for privacy. We believe that it is better to allow some tightly regulated research to go ahead under strict ethical oversight.
Many important research questions about the efficacy and safety of fertility treatments have remained unanswered over the years because the data we hold was ‘beyond reach’ of even the most important, high quality, ethically sound research.
Page last updated: 22 October 2013