The Ethics of Consent in a Shifting Genomic Ecosystem
Sandra Soo‐Jin Lee
Abstract
The collection and use of human genetic data raise important ethical questions about how to balance individual autonomy and privacy with the potential for public good. The proliferation of local, national, and international efforts to collect genetic data and create linkages to support large-scale initiatives in precision medicine and the learning health system creates new demands for broad data sharing that involve managing competing interests and careful consideration of what constitutes appropriate ethical trade-offs. This review describes these emerging ethical issues with a focus on approaches to consent and issues related to justice in the shifting genomic research ecosystem.
Topics & Concepts
AutonomyData sharingEconomic JusticeEngineering ethicsInformed consentPolitical scienceAdaptation (eye)Ethical issuesScale (ratio)Public relationsBusinessKnowledge managementInternet privacyPsychologyComputer scienceMedicineLawGeographyEngineeringAlternative medicineCartographyNeurosciencePathologyEthics in Clinical ResearchBiomedical Ethics and RegulationRace, Genetics, and Society