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Genetic research, adolescents, and informed consent
1Department of Paediatrics and School of Religion, University of Iowa College of Medicine, Iowa City 52242, USA.
Theoretical Medicine
|December 1, 1995
Summary
Adolescent informed consent in genetic research presents unique challenges. Many consent documents fail to meet current ethical standards, causing confusion and requiring revisions to respect adolescent autonomy.
Area of Science:
- Bioethics
- Genetics Research
- Adolescent Health
Background:
- Informed consent for adolescents in genetic research is complex.
- Ethical and legal standards for research involving minors are evolving.
- Adolescent decision-making capacity is increasingly recognized.
Purpose of the Study:
- To analyze consent documents used in U.S. genetic research involving adolescents.
- To identify discrepancies between consent documents and current ethical/legal standards.
- To propose improvements for adolescent informed consent processes.
Main Methods:
- Analysis of 70 informed consent documents.
- Documents collected from U.S. genetics investigators conducting research with children and adolescents.
- Evaluation against established and emerging ethical and legal guidelines.
Main Results:
- Many consent documents are unclear or confusing for adolescents.
- A significant number of documents do not align with current ethical and legal standards for adolescent research.
- Specific deficiencies in reflecting adolescent autonomy were identified.
Conclusions:
- Current informed consent documents for adolescent genetic research require significant revision.
- Recommendations are made to better align consent processes with evolving ethical perspectives on adolescent autonomy.
- Improved consent procedures are crucial for ethical genetic research involving minors.