Respecting Vulnerability: Informed Consent in Persons with Alzheimer’s Disease

Respecting Vulnerability: Informed Consent in Persons with Alzheimer’s Disease

November 2009

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Jeanne M. Sorrell, PhD, RN, FAAN Professor, Nursing Jsorrell@gmu.edu

Pamela R. Cangelosi, PhD, RN, CNE Associate Professor, Nursing

Abstract

Researchers and Institutional Review Boards struggle with the problem of how to protect vulnerable populations, such as persons with Alzheimer’s disease, when participating in research. It is essential to balance this protection with the need to assure that these vulnerable individuals have opportunities to participate in research. There has been little written in the nursing and medical literature about ethical concerns to consider in obtaining informed consent for research with persons with Alzheimer’s disease. This paper presents background information on obtaining informed consent in persons with Alzheimer’s and provides practical guidelines for implementation of protocols to help ensure both autonomy and protection of vulnerable populations in the informed consent process.

Keywords: informed consent, vulnerable populations, Alzheimer’s disease

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