Research into Alzheimer’s disease is increasingly focusing on measuring biological markers in the blood, brain and spinal fluid that may reflect early underlying changes in brain health, so called biomarkers. With the discovery and development of biomarkers that may inform an individual’s level of risk for Alzheimer’s disease comes important new ethical considerations. Whilst the accuracy of these biomarkers still need much refinement, weighing up the harms, benefits and rights of risk disclosure to healthy adults will also require much careful consideration before implementing guidelines into care. With the increasing use of such biomarkers in research however, discussions of how best to communicate the value of these results have come to the fore. Central to the decisions of how to manage these discussions has to be the view of patients and research participants.

Focus groups featuring PREVENT participants as well as people living with dementia were held to establish the attitudes and desires of those individuals for who disclosure of such risk information is most pertinent. This publication summarises the opinions voiced in those group discussions around areas such as how best to clearly disclose information and the type of support that should be made available after learning personalised results.