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Updated: May 13, 2026
06:16
Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Decision making for participation in dementia research
Betty S Black1, Malory Wechsler, Linda Fogarty
1Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, MD; Johns Hopkins Berman Institute of Bioethics, Baltimore, MD.
Summary
Individuals with cognitive impairment can participate in dementia research decisions. They prefer a "best interests" ethical standard for future proxy decisions, sometimes combined with other approaches.
Area of Science:
- Neuroscience
- Bioethics
- Clinical Research
Background:
- Dementia research requires ethical decision-making processes for participant involvement.
- Understanding the perspectives of individuals with cognitive impairment and their surrogates is crucial for ethical research conduct.
Purpose of the Study:
- To examine how individuals with cognitive impairment make decisions about participating in dementia research.
- To explore their preferences for ethical standards in future proxy research decisions.
Main Methods:
- Cross-sectional qualitative study using semistructured interviews.
- Involved 39 individuals with cognitive impairment and 46 study partners/surrogate decision-makers.
- Content analysis of transcribed interviews.
Main Results:
- Discrepancies were noted between subjects and surrogates regarding decision-making processes for study participation.
- Subjects and surrogates often disagreed on who made the final decision, though subjects were most frequently cited.
- For future proxy decisions, the 'best interests' standard was preferred, with some favoring a combination of standards.
Conclusions:
- Individuals with mild to moderate cognitive impairment can actively engage in research decision-making.
- Their expressed preferences for future proxy decisions should be considered.
- Supports obtaining both proxy consent and subject assent when capacity is limited.
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