Do people really want to know their risk of getting Alzheimer’s?

Getty Images by Claudia Cooper, Queen Mary University of London A new study has highlighted the complex emotions and ethical dilemmas of learning your future risk of Alzheimer’s disease. Among 274 healthy research participants from the US aged 65 and over, 40% declined to receive their personal risk estimates – despite having initially expressed an interest in doing so. These risk estimates were based on demographic data, brain imaging and blood biomarkers, offering an 82 to 84% accuracy in predicting the likelihood of developing Alzheimer’s disease within five years. By comparison, age alone can predict this risk with 79% accuracy. Tricky Shark/Shutterstock.com So the value of these tests is modest in people without any cognitive symptoms, and there are potential risks to disclosing them. People told they are at increased risk of dementia describe how this can feel like an illness in itself – or being in limbo between health and disease – and cause distress. Participants who did not want to be tested cited the uncertainty of the result, the burden of knowing, and their negative experiences of witnessing Alzheimer’s disease in others. Those with a family history of Alzheimer’s were less likely to want to know their results...