Informed Consent and Alzheimer Disease Research: Institutional Review Board Policies and Practices

  • Theodore R. LeBlang
  • Jean L. Kirchner
Part of the Advances in Alzheimer Disease Therapy book series (AADT)


It is the nature of Alzheimer Disease (AD) that patients will suffer impaired memory, failure of the ability to reason, and loss of competency (Marson et al., 1994). Thus the question of whether or not AD patients may grant informed consent to participation in dementia research is a compelling consideration for clinical investigators as well as Institutional Review Boards (IRBs).


Alzheimer Disease Alzheimer Disease Patient Associate Disorder Potential Therapeutic Benefit Proxy Consent 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. High DM, Whitehouse PJ, Post SG and Berg L (1994): Guidelines for addressing ethical and legal issues in Alzheimer Disease research. Alzheimer Disease and Associated Disorders 8 (Supp. 4):66.Google Scholar
  2. Kapp MB (1994): Proxy decision making in Alzheimer Disease research: durable powers of attorney, guardianship, and other alternatives. Alzheimer Disease and Associated Disorders 8 (Supp. 4):28.Google Scholar
  3. Marson DC, Ingram KK, Cody HA and Harrell LE (1995): Assessing the competency of patients with Alzheimer’s Disease under different legal standards: a prototype instrument. Arch Neurol 52:949.PubMedGoogle Scholar
  4. Marson DC, Schmitt FA, Ingram KK and Harrell LE (1994): Determining the competency of Alzheimer patients to consent to treatment and research. Alzheimer Disease and Associated Disorders 8 (Supp. 4):5.PubMedGoogle Scholar
  5. Moore DL (1994): An IRB member’s perspective on access to innovative therapy. Albany L Rev 57:559.Google Scholar
  6. Popp AJ and Moore DL (1994): Institutional review board evaluation of neuroscience protocols involving human subjects. Surg Neurol 41:162.PubMedCrossRefGoogle Scholar
  7. Resau LS (1995): Obtaining informed consent in Alzheimer’s research. J Neuroscience Nursing 27(1):57.CrossRefGoogle Scholar
  8. Sachs GA (1994): Advance consent for dementia research. Alzheimer Disease and Associated Disorders 8 (Supp. 4):19.Google Scholar
  9. Sachs GA, Stocking CB, Stern R, Cox DM, Hougham G and Sachs RS (1994): Ethical aspects of dementia research: informed consent and proxy consent. Clinical Research 42:403.PubMedGoogle Scholar

Copyright information

© Birkhäuser Boston 1997

Authors and Affiliations

  • Theodore R. LeBlang
    • 1
  • Jean L. Kirchner
    • 1
  1. 1.Department of Medical HumanitiesSouthern Illinois University School of MedicineSpringfieldUSA

Personalised recommendations