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Ethical issues in genetic research: disclosure and informed consent
P R Reilly1, M F Boshar, S H Holtzman
1Shriver Center for Mental Retardation, Waltham, Massachusetts 02154, USA.
Nature Genetics
|January 1, 1997
Summary
Genetic research participation poses risks like discrimination and distress. Enhanced consent processes are crucial to inform participants about these potential harms in gene mapping studies.
Area of Science:
- Genetics and Disease Predisposition
- Bioethics and Research Participation
Background:
- Accelerated research correlating genetic status with disease predisposition.
- Growing concerns regarding genetic discrimination and emotional distress for study participants.
Purpose of the Study:
- To address the need for comprehensive disclosure in the informed consent process for genetic studies.
- To ensure potential participants understand the risks associated with genetic research.
Main Methods:
- Describing a broad approach to disclosure and consent in gene mapping studies.
- Focusing on enhancing the consent form to include potential risks.
Main Results:
- Implementation of a comprehensive disclosure strategy.
- Improved understanding of risks among potential participants.
Conclusions:
- Broadening disclosure in the consent process is essential for ethical genetic research.
- Informed consent must adequately cover risks such as genetic discrimination and emotional distress.