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Informed consent for BRCA1 and BRCA2 testing: what clinicians should know about the process and content
S Miesfeldt1, S M Jones, W F Cohn
1Cancer Genetics Program, University of Virginia Health System, Charlottesville 22908, USA.
Journal of the American Medical Women'S Association (1972)
|November 9, 2000
Summary
Genetic testing for hereditary cancer risk, particularly for breast and ovarian cancer, offers predictive insights but necessitates careful informed consent. Understanding risks, benefits, and alternatives is crucial for women and families navigating these complex decisions.
Area of Science:
- Genomics and Personalized Medicine
- Oncology and Cancer Genetics
- Bioethics and Health Law
Background:
- Human genome exploration is transforming healthcare, enabling prediction of adult-onset disease susceptibility, including cancer.
- Hereditary cancer risk assessment, especially for breast and ovarian cancer, highlights both the potential and challenges of genetic testing.
- The complexity surrounding genetic testing for these cancers raises significant concerns regarding the informed consent process.
Purpose of the Study:
- To review the multifaceted issues associated with informed consent for genetic testing related to breast and ovarian cancer risk.
- To provide a comprehensive overview of the risks, benefits, and limitations inherent in genetic testing for hereditary cancer.
- To discuss critical confidentiality issues that must be addressed during the genetic testing informed consent process.
Main Methods:
- Literature review and synthesis of existing research on genetic testing for hereditary cancer risk.
- Analysis of ethical, legal, and social implications (ELSI) pertaining to informed consent in genetic testing.
- Examination of decision-making processes for women and families considering genetic testing for cancer predisposition.
Main Results:
- Informed consent for genetic testing is complex, requiring thorough understanding of potential outcomes and implications.
- Genetic testing provides valuable information on cancer susceptibility but carries risks, including psychological impact and privacy concerns.
- Alternatives to genetic testing exist and should be discussed to ensure comprehensive patient counseling.
Conclusions:
- Effective informed consent is paramount for genetic testing, ensuring individuals understand the nuances of hereditary cancer risk assessment.
- Balancing the benefits of predictive genetic information with potential risks and limitations is essential for ethical practice.
- Empowering women and families with knowledge of alternatives supports autonomous decision-making in hereditary cancer risk management.