Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

Must we? The ethical and practical challenges of implementing consumer preferences for participation in dementia research   (997)

Cynthia Forlini 1 , Shivana Chandra 2
  1. Deakin University, Geelong, VIC, Australia
  2. Brain and Mind Centre, The University of Sydney, Sydney, NSW, Australia

The World Health Organization has declared dementia a public health priority. The process of aligning the research agenda with this priority elicits 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 hindering recruitment of essential 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 consumers. Robust justification to support whether and how the policies and practices that govern dementia research should be changed remains elusive. In two steps, this paper addresses the perennial question in ethics of whether descriptive data can provide an ethical impetus for what ought to be done. First, we present the results of a scoping review of dementia consumers’ preferences for participation in research according to six ethically challenging themes: (1) motives for research participation, (2) informed consent, (3) recruitment, (4) potential risks, (5) data sharing, and (6) use of technology. Second, consumer preferences from the scoping review are 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.