報告書
発行: 2019年10月2日

Leapfrogging with Genomic Data:  Workshop Report

This workstream aims to address this issue by developing and testing elements of genomic data policies and a corresponding ethical framework from a “future of healthcare” and patient-centric perspective. The areas of focus for the workstream are four foundational categories for genomic data collection and use: consent, data privacy, data access and benefit sharing. Since genomic data is the most sensitive form of data, the development of sound policy approaches here will enable and inform approaches to all other types of sensitive data.

This workstream aims to address this issue by developing and testing elements of genomic data policies and a corresponding ethical framework from a “future of healthcare” and patient-centric perspective. The areas of focus for the workstream are four foundational categories for genomic data collection and use: consent, data privacy, data access and benefit sharing. Since genomic data is the most sensitive form of data, the development of sound policy approaches here will enable and inform approaches to all other types of sensitive data.

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