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Abstract
Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.
Highlights
According to the World Health Organization, approximately 50 million people have dementia, with 10 million new cases occurring each year (World Health Organization 2018)
While we focus on literature addressing participants with dementia, we do not exclude studies based on how the researchers defined dementia, and we recognize that other adults may be subject to similar considerations or stereotypes by researchers and research ethics committees (RECs)
Handling more conventional research ethics issues as well as more relational and experiential aspects of research ethics is of high importance considering the prevalence of dementia and the amount of resources allocated to research on dementia
Summary
According to the World Health Organization, approximately 50 million people have dementia, with 10 million new cases occurring each year (World Health Organization 2018). Dementia is one of the leading causes of disability in older people, seriously affecting those with the diagnosis and their surrounding social networks (World Health Organization 2018). During the 2017 fiscal year, the US National Institutes of Health spent approximately $1.4 billion on research in Alzheimer’s disease and related dementias (US National Institutes of Health 2017). Despite the considerable financial resources, conducting research on dementia is still logistically challenging. Two of the most salient barriers to completing timely, meaningful research are low enrollment and high attrition (Grill and Karlawish 2010). In reviewing recent commentary on ethical practices in dementia research, we hope to understand the bases for these barriers and potential solutions to overcome them
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