Ethics Reporting in Publications about Research with Alzheimer's Disease Patients

Carol B. Stocking, Gavin W. Hougham, Aliza R. Baron, Greg Sachs

Research output: Contribution to journalArticle

16 Citations (Scopus)

Abstract

Persons with impaired decision-making capacity require special ethical protections during recruitment for and participation in research. To assess how fully basic protections for these persons were reported in the literature, the first structured review of a sample of reports of trials including Alzheimer's subjects was performed in 62 journals between January 1992 and December 1998. Neither institutional review board review nor informed consent was mentioned in 28% of the studies. In 48% of the studies, there was no mention of subject involvement in the consent process or that any potential subjects refused or withdrew. Protections may have been offered and simply not reported in the journal articles. The critical importance of these protections would be demonstrated if editors required that authors provide full documentation of ethical protections when submitting an article for review. These might be briefly reported in the articles but be made available electronically to interested readers. Authors could then specify in detail how they conducted their research involving persons with diminished decision-making capacity.

Original languageEnglish (US)
Pages (from-to)305-310
Number of pages6
JournalJournal of the American Geriatrics Society
Volume52
Issue number2
DOIs
StatePublished - Feb 2004
Externally publishedYes

Fingerprint

Ethics
Publications
Alzheimer Disease
Decision Making
Research
Research Ethics Committees
Informed Consent
Documentation

Keywords

  • Decision-making capacity
  • Informed consent
  • Research ethics
  • Vulnerable subjects

ASJC Scopus subject areas

  • Geriatrics and Gerontology

Cite this

Ethics Reporting in Publications about Research with Alzheimer's Disease Patients. / Stocking, Carol B.; Hougham, Gavin W.; Baron, Aliza R.; Sachs, Greg.

In: Journal of the American Geriatrics Society, Vol. 52, No. 2, 02.2004, p. 305-310.

Research output: Contribution to journalArticle

Stocking, Carol B. ; Hougham, Gavin W. ; Baron, Aliza R. ; Sachs, Greg. / Ethics Reporting in Publications about Research with Alzheimer's Disease Patients. In: Journal of the American Geriatrics Society. 2004 ; Vol. 52, No. 2. pp. 305-310.
@article{b013a3feafa64f409ef55c9aacb68c15,
title = "Ethics Reporting in Publications about Research with Alzheimer's Disease Patients",
abstract = "Persons with impaired decision-making capacity require special ethical protections during recruitment for and participation in research. To assess how fully basic protections for these persons were reported in the literature, the first structured review of a sample of reports of trials including Alzheimer's subjects was performed in 62 journals between January 1992 and December 1998. Neither institutional review board review nor informed consent was mentioned in 28{\%} of the studies. In 48{\%} of the studies, there was no mention of subject involvement in the consent process or that any potential subjects refused or withdrew. Protections may have been offered and simply not reported in the journal articles. The critical importance of these protections would be demonstrated if editors required that authors provide full documentation of ethical protections when submitting an article for review. These might be briefly reported in the articles but be made available electronically to interested readers. Authors could then specify in detail how they conducted their research involving persons with diminished decision-making capacity.",
keywords = "Decision-making capacity, Informed consent, Research ethics, Vulnerable subjects",
author = "Stocking, {Carol B.} and Hougham, {Gavin W.} and Baron, {Aliza R.} and Greg Sachs",
year = "2004",
month = "2",
doi = "10.1111/j.1532-5415.2004.52075.x",
language = "English (US)",
volume = "52",
pages = "305--310",
journal = "Journal of the American Geriatrics Society",
issn = "0002-8614",
publisher = "Wiley-Blackwell",
number = "2",

}

TY - JOUR

T1 - Ethics Reporting in Publications about Research with Alzheimer's Disease Patients

AU - Stocking, Carol B.

AU - Hougham, Gavin W.

AU - Baron, Aliza R.

AU - Sachs, Greg

PY - 2004/2

Y1 - 2004/2

N2 - Persons with impaired decision-making capacity require special ethical protections during recruitment for and participation in research. To assess how fully basic protections for these persons were reported in the literature, the first structured review of a sample of reports of trials including Alzheimer's subjects was performed in 62 journals between January 1992 and December 1998. Neither institutional review board review nor informed consent was mentioned in 28% of the studies. In 48% of the studies, there was no mention of subject involvement in the consent process or that any potential subjects refused or withdrew. Protections may have been offered and simply not reported in the journal articles. The critical importance of these protections would be demonstrated if editors required that authors provide full documentation of ethical protections when submitting an article for review. These might be briefly reported in the articles but be made available electronically to interested readers. Authors could then specify in detail how they conducted their research involving persons with diminished decision-making capacity.

AB - Persons with impaired decision-making capacity require special ethical protections during recruitment for and participation in research. To assess how fully basic protections for these persons were reported in the literature, the first structured review of a sample of reports of trials including Alzheimer's subjects was performed in 62 journals between January 1992 and December 1998. Neither institutional review board review nor informed consent was mentioned in 28% of the studies. In 48% of the studies, there was no mention of subject involvement in the consent process or that any potential subjects refused or withdrew. Protections may have been offered and simply not reported in the journal articles. The critical importance of these protections would be demonstrated if editors required that authors provide full documentation of ethical protections when submitting an article for review. These might be briefly reported in the articles but be made available electronically to interested readers. Authors could then specify in detail how they conducted their research involving persons with diminished decision-making capacity.

KW - Decision-making capacity

KW - Informed consent

KW - Research ethics

KW - Vulnerable subjects

UR - http://www.scopus.com/inward/record.url?scp=1242306984&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=1242306984&partnerID=8YFLogxK

U2 - 10.1111/j.1532-5415.2004.52075.x

DO - 10.1111/j.1532-5415.2004.52075.x

M3 - Article

C2 - 14728645

AN - SCOPUS:1242306984

VL - 52

SP - 305

EP - 310

JO - Journal of the American Geriatrics Society

JF - Journal of the American Geriatrics Society

SN - 0002-8614

IS - 2

ER -