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Published on: August 15, 2019
When does an illness begin: genetic discrimination and disease manifestation
Anya E R Prince1, Benjamin E Berkman
1Cancer Legal Resource Center (CLRC).
Summary
The Genetic Information Nondiscrimination Act (GINA) protects against genetic discrimination but not manifested diseases. This paper analyzes legal definitions of "manifestation" to ensure GINA
Area of Science:
- Health Law
- Genetics Policy
- Legal Interpretation
Background:
- The Genetic Information Nondiscrimination Act of 2008 (GINA) aims to prevent discrimination based on genetic information.
- GINA's protection is limited, excluding individuals with manifested diseases or conditions.
- The definition of "manifestation" is critical for determining GINA's scope of protection.
Purpose of the Study:
- To examine various legal definitions of disease manifestation.
- To explore historical judicial challenges in applying these definitions.
- To propose an optimal framework for interpreting "manifestation" under GINA.
Main Methods:
- Analysis of legal frameworks used by courts to define disease manifestation.
- Review of case law concerning the interpretation of "manifestation" under GINA.
- Comparative examination of three interpretive frameworks: "apparent symptoms," "patient action," and "physician action."
Main Results:
- Courts have historically struggled with consistent application of "manifestation" definitions.
- Three primary frameworks for interpreting manifestation have emerged: apparent symptoms, patient action, and physician action.
- The "manifestation as physician action" framework is identified as the most suitable for GINA's objectives.
Conclusions:
- The "manifestation as physician action" framework best aligns with GINA's intent to encourage genetic testing and preventive care.
- Interpreting "manifestation" in favor of the plaintiff is recommended to fully realize GINA's protective goals.
- Clearer legal standards for disease manifestation are needed to enhance patient protections under GINA.
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