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 want to find out how and why people decide to consent (or not) to their HFEA data being used in research. We hope that with better understanding of how people make this choice about consent, we may be able to improve consent rates – which would mean we have better data going forward. We want to speak to women and men who have had fertility treatment in the UK in the last 5 years.

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

Download the Participant Information Sheet