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Informed consent in genomics and genetic research.
Amy L McGuire1, Laura M Beskow
1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA. amcguire@bcm.edu
Annual Review of Genomics and Human Genetics
|May 19, 2010
Summary
Genetic and genomic research presents unique informed consent challenges. This paper explores these issues and proposes alternative models to balance participant protection with research advancement.
Area of Science:
- Genetics and Genomics
- Bioethics
- Informed Consent Law
Background:
- Genetic and genomic research presents unique challenges to traditional informed consent processes.
- The complexity and potential long-term implications of genetic data necessitate a re-evaluation of consent norms.
Purpose of the Study:
- To discuss the specific challenges posed by genetic and genomic research to informed consent.
- To explore current elements of informed consent for such research in the United States.
- To consider and evaluate proposed alternative consent models.
Main Methods:
- Literature review of existing informed consent frameworks.
- Analysis of legal and ethical considerations in genetic research.
- Comparative study of proposed alternative consent models.
Main Results:
- Genetic research complexities, including broad data sharing and future use, strain traditional consent.
- Existing US informed consent models require adaptation for genetic and genomic studies.
- Several alternative consent models aim to enhance participant autonomy and data utility.
Conclusions:
- Adapting informed consent is crucial for ethical genetic and genomic research.
- Alternative models offer promising approaches to balance participant rights and research progress.
- Future research should focus on implementing and evaluating these novel consent strategies.
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