Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus

Article

Pachana, Nancy A., Liddle, Jacki, Peel, Nancye M., Beattie, Elizabeth, Juang, Christine and Knight, Bob G.. 2015. "Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus." Journal of Alzheimer's Disease. 43 (3), pp. 701-707. https://doi.org/10.3233/JAD-141956
Article Title

Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus

ERA Journal ID16300
Article CategoryArticle
AuthorsPachana, Nancy A. (Author), Liddle, Jacki (Author), Peel, Nancye M. (Author), Beattie, Elizabeth (Author), Juang, Christine (Author) and Knight, Bob G. (Author)
Journal TitleJournal of Alzheimer's Disease
Journal Citation43 (3), pp. 701-707
Number of Pages7
Year2015
Place of PublicationAmsterdam, Netherlands
ISSN1387-2877
1875-8908
Digital Object Identifier (DOI)https://doi.org/10.3233/JAD-141956
Web Address (URL)http://content.iospress.com/articles/journal-of-alzheimers-disease/jad141956
Abstract

The goal of this study was to describe researchers' experiences in submitting ethical proposals focused on older adult populations, including studies with persons with dementia, to ethical review boards. Ethical approval was granted for an online survey. Researchers were recruited via listservs and snowballing techniques. Participants included 157 persons (73% female) from Australia and the United States, with a mean age of 46 (±13). Six main issues were encountered by researchers who participated in this survey. In descending order, these included questions regarding: informed consent and information requirements (61.1%), participants' vulnerability, particularly for those with cognitive impairments (58.6%), participant burden (44.6%), data access (29.3%), adverse effects of data collection/intervention (26.8%), and study methodology (25.5%). An inductive content analysis of responses revealed a range of encounters with ethical review panels spanning positive, negative, and neutral experiences. Concerns voiced about ethical review boards included committees being overly focused on legal risk, as well as not always hearing the voice of older research participants, both potential and actual. Respondents noted inability to move forward on studies, as well as loss of researchers and participant groups from gerontological and clinical research as a result of negative interactions with ethics committees. Positive interactions with the committees reinforced researchers' need to carefully construct their research approaches with persons with dementia in particular. Suggested guidelines for committees when dealing with ethics applications involving older adults include self-reflecting on potential biases and stereotypes, and seeking further clarification and information from gerontological researchers before arriving at decisions.

Keywordsaging, ethics committees, frail older adults, healthcare research, research ethics
ANZSRC Field of Research 2020320210. Geriatrics and gerontology
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Byline AffiliationsUniversity of Queensland
Queensland University of Technology
University of Southern California, United States
Institution of OriginUniversity of Southern Queensland
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