A practical and ethical analysis of incorporating patient preferences into dementia research policy and practice

• In Event: What are the Relationships between STS and Empirical Ethics? A Panel Discussion on Neuroethics

Abstract

The World Health Organization has declared dementia a public health priority. The process of aligning the research agenda with this priority has elicited significant challenges in studying the prevention, detection, and treatment of dementia. For example, emerging technologies such as speech tracking through smartphone apps are being investigated as tools to detect cognitive decline. However, studies are limited by ethical and legal concerns for adequate consent and privacy, often hindering recruitment of key research participants with moderate to severe cognitive impairment. Overall, these challenges may be preventing valuable translational research that would benefit the health, care and quality of life of dementia patients and their caregivers. Robust justification to support whether and how the policies and practices that govern dementia research should be changed remains elusive. This paper addresses the perennial question in the ethics of science of whether descriptive data from the social studies of science can provide an ethical impetus for what ought to be done. Empirical evidence about the preferences of dementia patients is reviewed to address the most ethically challenging issues in dementia research: (1) motives for research participation, (2) informed consent, (3) recruitment, (4) potential risks, and (5) data sharing. Patient preferences are then situated in the context of current research ethics policies to demonstrate how their implementation might create opportunities for dementia research or pose collateral practical and ethical challenges. This analysis initiates a dialogue about options for reforming dementia research and continues the debate on the normative nature of patient engagement activities.

Author

• Cynthia Forlini, University of Sydney