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The debate over research on stored biological samples: what do sources think?
Dave Wendler1, Ezekiel Emanuel
1Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, MD 20892, USA.
Archives of Internal Medicine
|July 2, 2002
Summary
Most individuals want to control the use of their biological samples in research, regardless of disease studied. Many also desire to be informed of uncertain clinical results from such studies.
Area of Science:
- Bioethics
- Medical Research
- Public Health
Background:
- Informed consent for research on stored biological samples is a significant ethical and scientific debate.
- Limited data exists on public attitudes towards consent for biological sample research.
Purpose of the Study:
- To investigate public attitudes on consent requirements for research involving stored biological samples.
- To understand preferences regarding sample identifiability and disease focus in research.
Main Methods:
- A telephone survey was conducted with 504 US residents.
- Two cohorts were surveyed: prior clinical research participants and randomly selected Medicare recipients.
Main Results:
- A majority (65.8%) require consent for identifiable clinical samples; 27.3% for anonymized clinical samples.
- Fewer respondents require consent for research-derived samples (29.0% identifiable, 12.1% anonymized).
- Most want to be informed of uncertain clinical results (88.8%) and do not want to impose disease-specific safeguards (91.9%).
Conclusions:
- Current policies on stored biological sample research may not align with public preferences.
- Individuals generally desire control over sample use, are unconcerned about the specific disease studied, and wish to receive significant results.
- Further research is needed to confirm the generalizability of these findings.