Consent and Assent to Participate in Research from People with Dementia

Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the c...

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Bibliographic Details
Published in:Nursing ethics 2007-01, Vol.14 (1), p.27-40
Main Authors: Slaughter, Susan, Cole, Dixie, Jennings, Eileen, Reimer, Marlene A
Format: Article
Language:English
Subjects:
Aged
Canada
Comprehension
Dementia
Dementia - diagnosis
Dementia - psychology
Ethics, Research
Family - psychology
Female
Geriatric Assessment
Guidelines as Topic
Human Experimentation - ethics
Humans
Informed consent
Informed Consent - ethics
Informed Consent - psychology
Medical research
Mental Competency - psychology
Nursing
Nursing Assessment - ethics
Patient Advocacy - ethics
Patient participation
Patient Selection - ethics
Principle-Based Ethics
Recruitment
Research Personnel - ethics
Risk Assessment - ethics
Third-Party Consent - ethics
Vulnerable people
Vulnerable Populations - psychology
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Summary:Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study.
ISSN:0969-7330
1477-0989
DOI:10.1177/0969733007071355