Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus
Pachana, Nancy A., Liddle, Jacki, Peel, Nancye M., Beattie, Elizabeth, Juang, Christine, & 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.
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.
Impact and interest:
Citation counts are sourced monthly from and citation databases.
Citations counts from theindexing service can be viewed at the linked Google Scholar™ search.
|Item Type:||Journal Article|
|Keywords:||ethical review boards, researchers, later life, aging, ethics committees, frail older adults, healthcare research, research ethics|
|Subjects:||Australian and New Zealand Standard Research Classification > MEDICAL AND HEALTH SCIENCES (110000)
Australian and New Zealand Standard Research Classification > MEDICAL AND HEALTH SCIENCES (110000) > PUBLIC HEALTH AND HEALTH SERVICES (111700) > Aged Health Care (111702)
Australian and New Zealand Standard Research Classification > PHILOSOPHY AND RELIGIOUS STUDIES (220000) > APPLIED ETHICS (220100)
|Divisions:||Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Current > Schools > School of Nursing
|Copyright Owner:||Copyright 2015 IOS Press|
|Deposited On:||13 Jan 2015 23:55|
|Last Modified:||16 Feb 2015 06:09|
Repository Staff Only: item control page