Abstract
Objective: Ethical concerns persist over research participation of decisionally impaired persons, such as those suffering from Alzheimer's disease. Such persons may be poor judges of the burdens and risks of specific research protocols. Since even decisionally incapacitated persons cannot be enrolled in studies against their objection, their preferences convey important ethical information. The authors examined the effects of cognitive and decisional impairment on willingness to participate in research among persons with Alzheimer's disease. Method: Cognitive status, decision-making ability, and willingness to participate in four hypothetical research protocols of varying risk/benefit profiles were measured in 34 subjects with mild to mild/ moderate Alzheimer's disease and 14 healthy elderly comparison subjects. Univariate and multivariate methods were used to analyze the effects of impairment in cognitive and decision-making abilities on willingness to participate in research. Results: There were no differences in willingness to participate found between the Alzheimer's and the healthy comparison subjects for three of the four hypothetical protocols. In both groups, willingness declined as risk increased. Within the Alzheimer's disease group, the presence of greater decisional impairment tended to predict less willingness to participate in research, even after adjusting for cognitive impairment, gender, and education. Conclusions: Persons with decisional impairment due to Alzheimer's disease are as a group able to distinguish between research protocols of varying risk/ benefit profiles. Because declining decision-making abilities may predict declining willingness to participate in research, informed consent procedures for Alzheimer's disease research should be sensitive to this possibility.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 797-802 |
| Number of pages | 6 |
| Journal | American Journal of Psychiatry |
| Volume | 159 |
| Issue number | 5 |
| DOIs | |
| State | Published - 2002 |
| Externally published | Yes |
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ASJC Scopus subject areas
- Psychiatry and Mental health
Cite this
Impaired decision-making ability in subjects with Alzheimer's disease and willingness to participate in research. / Kim, Scott Y H; Cox, Christopher; Caine, Eric D.
In: American Journal of Psychiatry, Vol. 159, No. 5, 2002, p. 797-802.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Impaired decision-making ability in subjects with Alzheimer's disease and willingness to participate in research
AU - Kim, Scott Y H
AU - Cox, Christopher
AU - Caine, Eric D.
PY - 2002
Y1 - 2002
N2 - Objective: Ethical concerns persist over research participation of decisionally impaired persons, such as those suffering from Alzheimer's disease. Such persons may be poor judges of the burdens and risks of specific research protocols. Since even decisionally incapacitated persons cannot be enrolled in studies against their objection, their preferences convey important ethical information. The authors examined the effects of cognitive and decisional impairment on willingness to participate in research among persons with Alzheimer's disease. Method: Cognitive status, decision-making ability, and willingness to participate in four hypothetical research protocols of varying risk/benefit profiles were measured in 34 subjects with mild to mild/ moderate Alzheimer's disease and 14 healthy elderly comparison subjects. Univariate and multivariate methods were used to analyze the effects of impairment in cognitive and decision-making abilities on willingness to participate in research. Results: There were no differences in willingness to participate found between the Alzheimer's and the healthy comparison subjects for three of the four hypothetical protocols. In both groups, willingness declined as risk increased. Within the Alzheimer's disease group, the presence of greater decisional impairment tended to predict less willingness to participate in research, even after adjusting for cognitive impairment, gender, and education. Conclusions: Persons with decisional impairment due to Alzheimer's disease are as a group able to distinguish between research protocols of varying risk/ benefit profiles. Because declining decision-making abilities may predict declining willingness to participate in research, informed consent procedures for Alzheimer's disease research should be sensitive to this possibility.
AB - Objective: Ethical concerns persist over research participation of decisionally impaired persons, such as those suffering from Alzheimer's disease. Such persons may be poor judges of the burdens and risks of specific research protocols. Since even decisionally incapacitated persons cannot be enrolled in studies against their objection, their preferences convey important ethical information. The authors examined the effects of cognitive and decisional impairment on willingness to participate in research among persons with Alzheimer's disease. Method: Cognitive status, decision-making ability, and willingness to participate in four hypothetical research protocols of varying risk/benefit profiles were measured in 34 subjects with mild to mild/ moderate Alzheimer's disease and 14 healthy elderly comparison subjects. Univariate and multivariate methods were used to analyze the effects of impairment in cognitive and decision-making abilities on willingness to participate in research. Results: There were no differences in willingness to participate found between the Alzheimer's and the healthy comparison subjects for three of the four hypothetical protocols. In both groups, willingness declined as risk increased. Within the Alzheimer's disease group, the presence of greater decisional impairment tended to predict less willingness to participate in research, even after adjusting for cognitive impairment, gender, and education. Conclusions: Persons with decisional impairment due to Alzheimer's disease are as a group able to distinguish between research protocols of varying risk/ benefit profiles. Because declining decision-making abilities may predict declining willingness to participate in research, informed consent procedures for Alzheimer's disease research should be sensitive to this possibility.
UR - http://www.scopus.com/inward/record.url?scp=0036236440&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=0036236440&partnerID=8YFLogxK
U2 - 10.1176/appi.ajp.159.5.797
DO - 10.1176/appi.ajp.159.5.797
M3 - Article
C2 - 11986134
AN - SCOPUS:0036236440
VL - 159
SP - 797
EP - 802
JO - American Journal of Psychiatry
JF - American Journal of Psychiatry
SN - 0002-953X
IS - 5
ER -