About
Background and Significance
Societal trust in the research system and confidence in its outcomes is vital for the uptake of innovation in society, and for continued public support for investment in research and innovation.
Trust depends on scientists and engineers’ capacity to demonstrate high standards of research integrity, an ethical mind-set, critical thinking and rigorous exploration of ideas in an open, transparent manner, and their desire to maximise the societal relevance of scientific outcomes.
We are a group of scientists, bioethics, clinicians, and medical professionals based at Trinity College and the University of Oxford and University of California San Francisco working at developing institutional capacity at Trinity and a bioethical framework for the recent advances in brain health, as they pertain to improving quality of life and longevity of the wider population.
A transformation in our understanding of dementia is happening through advances in biomarkers, genetics, and other data used as dementia risk evidence (DRE). These data are increasingly used in high income countries (HIC) to inform clinical diagnosis and management, and offer great promise for the future of precision dementia care. However, advances are also revealing ethical and legal gaps and practical questions about how to use and communicate these data.
For example, current clinical guidelines, developed in the HIC context, recommend against disclosing individual-level dementia risk information to cognitively unimpaired individuals, due to its low predictive value and potential for psychosocial harm. By contrast, research shows that 9 out of 10 Europeans want to know their risk of brain disease, and that once individuals know their personalized risk of AD, they adopt health behaviours faster. Will sharing data with at risk individuals cause distress? Will it lead to addressing of modifiable risk factors for dementia? Over 60% of the global burden of dementia, however, occurs in low and middle-income countries (LMIC). As low-cost and portable biomarker technologies for use in the LMIC context are under development, such as blood based amyloid tests, there’s an urgent need to adopt a global perspective for addressing these questions. In addition to advancing clinical science and early detection of dementia, in the LMIC context, DREs may be used for awareness raising and public education about dementia, and to increase health literacy on modifiable lifestyle factors for dementia prevention. However, public attitudes on sharing of dementia risk information in LMIC countries remain unknown. This research programme will examine culturally informed and context specific research strategies for closing this gap.