Why the lack of data? And what can we do about it?
The limited amount of data is not the fault of any individual clinic – it’s the result of system-wide limitations in data collection. Until April 2005, there was no centralised data collection on egg donation in the UK. Since then, the HFEA has kept records of all UK egg (and sperm) donors. Donors are responsible for informing the HFEA about any changes in their contact information so that the registry can be kept up to date.
With appropriate resources, registries can be used to understand long-term impacts of egg donation. With donor consent, links could be made between a registry and broader health data, allowing researchers to see trends or risks associated with egg donation ten, twenty, or more years in the future. It is a solution that will take time; after all, we have to wait a long time for the long-term impacts. But there are implications of not starting this research now.
Without data about the long-term health impact of egg donation, how can potential egg donors be expected to make informed decisions about the process? The lack of information is certainly a barrier to me, and it may well be for many other women. And without egg donors, a greater number of men, women and non-binary people suffering from involuntary infertility would remain childless.
 The clinical definition of infertility refers to the inability for a male and female to conceive after 12 months of ‘regular unprotected intercourse’. In contrast, subfertility refers to unwanted non-conception for a prolonged period that lasts less than one year. Both definitions assume relationships between males and females, and as such are not inclusive of all members of the LGBTQ+ community. More on this topic can be read here.
The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.