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Older Teens' Understanding and Perceptions of Risks in Studies With Genetic Testing: A Pilot Study
Richard F Ittenbach1, Jeremy J Corsmo2, Robert V Miller3
1a Division of Biostatistics and Epidemiology (MLC 5041), Cincinnati Children's Hospital Medical Center , Cincinnati , Ohio , USA.
AJOB Empirical Bioethics
|April 20, 2019
Summary
Teens desire more information and control during the informed consent process for genetic testing research. Understanding their perspectives on risks is crucial for improving research participation and ethical considerations.
Area of Science:
- Bioethics
- Genetics Research
- Adolescent Health
Background:
- Current informed consent processes in clinical research are often formalistic and poorly understood.
- There's a recognized gap between the ideal informed consent process and current practices.
- Adolescents' comprehension of risks in genetic testing research requires further investigation.
Purpose of the Study:
- To identify and characterize key aspects of the informed consent process impacting teens' understanding of risks.
- To explore teens' perceptions of risks associated with participation in genetic testing studies.
- To gather insights for improving the informed consent process for adolescent participants.
Main Methods:
- Qualitative content analysis of focus-group interviews with 15 adolescents.
- Participants had recent experience (within 2 years) in genetic testing research.
- Focus groups were facilitated by an experienced moderator to explore personal research experiences.
Main Results:
- Three primary themes emerged: fear of potential outcomes, need for enhanced risk information, and desire for autonomy in decision-making.
- Adolescents expressed concerns regarding the unknown consequences of genetic testing.
- Participants emphasized the importance of having control over their participation and data.
Conclusions:
- Adolescents can effectively articulate critical issues within the informed consent/assent process for genetic testing research.
- Findings highlight the need for clearer communication of risks and greater adolescent involvement in decision-making.
- The study's results align with existing research on adolescent perceptions in genetic research, suggesting a need for tailored consent strategies.
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