Research on the impact of incidental findings from the imaging assessment
UK Biobank is working with social scientists and health economists to gain a better understanding of the risks and benefits associated with providing feedback of potentially serious incidental findings to UK Biobank participants during the imaging pilot study. In some cases, these incidental findings can have serious health implications; in others, the medical implications are less clear, and many potentially serious findings may – after further investigation or the passage of time – turn out not to be of concern after all. The impact that feedback of information about potentially serious incidental findings has on participants has not been well researched. This work is important because there is currently no consensus in the research community on which (if any) incidental findings should be fed back and the best methods for doing this. The UK Biobank imaging pilot study offers a valuable opportunity to ascertain the views of research participants and of health professionals involved in the feedback process, including radiographers, radiologists and GPs.
The work has four key aims:
1. To assess the attitudes of participants to receiving feedback of potentially serious incidental findings and to understand whether these attitudes change over time.
2. To understand the impact of receiving feedback on UK Biobank participants and on their friends and families.
3. To assess the attitudes of radiographers, radiologists and GPs (who are involved in the feedback process) to the procedures established by UK Biobank for the feedback of incidental findings during the imaging pilot study.
4. To help inform the policy on feedback for the main phase of the imaging study.
This research will involve sending out questionnaires to assess the impact of receiving information about a potentially serious incidental finding to participants and their GPs. Qualitative research will also be conducted based on interviews with participants and health professionals (GPs, radiographers and radiologists). The results will be used to inform the main phase of the imaging study.
Published Papers
