A contextual integrity approach to genomic information: what bioethics can learn from big data ethics

Area of Science:

• Bioethics
• Genomic Data Science
• Information Ethics

Background:

• Genomic data generation and analysis are accelerating rapidly.
• Genomic information is utilized across medical, commercial, forensic, and research domains.
• Interdisciplinary data sharing presents ethical challenges.

Purpose of the Study:

• To critique the limitations of informed consent for genomic data.
• To propose an alternative ethical framework for genomic information.
• To broaden the bioethical discourse on genomic data management.

Main Methods:

• The paper analyzes the shortcomings of traditional informed consent in diverse genomic data contexts.
• It introduces and advocates for the contextual integrity framework.
• The framework is applied to explore ethical issues in various societal applications of genomic data.

Main Results:

• The informed consent approach is insufficient for managing genomic data across multiple societal contexts.
• The contextual integrity framework provides a robust model for ethical genomic data handling.
• This framework prioritizes context-specific norms for information sharing and protection.

Conclusions:

• The contextual integrity framework effectively addresses ethical, social, and political factors in genomic data use.
• It offers a versatile approach applicable across various societal domains.
• This framework balances individual, group, and societal interests in genomic information governance.