Taking pART
Understanding how people decide whether to consent to the use of their fertility data in research
The main aim of this study is to find out how people who undergo fertility treatment in England make the decision to consent (or not) to allow their data to be used in infertility research. The study will use in-depth recorded interviews with three groups involved in the consent process – the women undergoing treatment, their partners and the clinic staff who explain the forms and ask for consent.
Why are we doing the study?
Research has shown that most children born after fertility treatment are healthy. However, we have less information about the longer term effects of fertility treatment on women and their children. As the treatments that clinics use change, it is also very important that we can continue to conduct research to find out about the health of children born as a result. The Human Fertilisation and Embryology Authority (HFEA) collect data on all the fertility treatment conducted in the UK, and these data can be very useful for research. For example, it has been used to show that children born after IVF in Britain are not at greater risk of cancer overall. People receiving fertility treatment are asked to give consent to the use of these data in research studies, and currently around half agree. This means that researchers may be getting only half the picture.
We wanted to find out how and why people decide to consent (or not) to their HFEA data being used in research. To do this we conducted in-depth interviews with women and men undergoing fertility treatment, and with the clinic staff who explain the consent forms (20 patients, 9 staff). We also carried out an online anonymous survey to allow people to tell us their views without giving any identifiable information (40 responses). We analysed the transcripts and identified themes that helped to explain how and why consent was (or was not) given. We found important themes included: understanding of the forms; trust in those asking, in researchers and in the HFEA; and wider attitudes to data use. We also highlighted that these factors influence who allows their data to be used, which could affect the representativeness of the information available to researchers.
This study is now complete and findings have been published in the BMJ Open.
If you would like to find out more about this study please contact Dr Claire Carson on (01865) 289755, or you can email:
claire.carson@npeu.ox.ac.uk