Related Experiment Videos
Research without consent: community perspectives from the Community VOICES Study
Lynne D Richardson1, Ilene Wilets, Deborah Fish Ragin
1Department of Emergency Medicine, Mount Sinai School of Medicine, New York, NY 10029, USA. lynne.richardson@mssm.edu
Summary
Community attitudes toward emergency research without informed consent (RWC) vary, with personal experiences heavily influencing opinions. There
Area of Science:
- Medical Ethics
- Public Health Research
- Community Engagement
Background:
- Federal regulations permit emergency research without informed consent under specific conditions.
- The Public Access Defibrillation (PAD) Trial utilized these regulations, training laypersons for cardiac arrest response.
- Understanding community perspectives on research without consent (RWC) is crucial for ethical conduct.
Purpose of the Study:
- To explore community attitudes regarding regulations allowing emergency research without informed consent.
- To investigate community definitions of 'community' and preferred consultation methods for RWC studies.
Main Methods:
- Six focus groups were conducted with community residents and lay responders from the PAD Trial in New York City.
- Participants discussed ethical issues of RWC, their concept of community, and consultation strategies.
- Grounded theory content analysis was applied to the focus group data.
Main Results:
- Definitions of 'community' were diverse, and no single consultation method was universally favored.
- Participant opinions on RWC ranged from strong support to adamant opposition, often based on personal experiences.
- Individuals opposing RWC in general often supported specific RWC scenarios.
Conclusions:
- No consensus exists on community definition or consultation methods for RWC.
- Personal experiences significantly shape community members' attitudes toward RWC.
- General attitudes toward RWC may differ from reactions to specific research protocols.