Data Privacy and Security Policy

Guides sharing of genomic and related health data to respect participant and patient privacy and integrity

Overview

Strong privacy and security practices are essential to sustain public trust and confidence in science and medicine, and to allow societies and human health to flourish across the globe. Developed by the GA4GH Regulatory & Ethics Work Stream (REWS), the Data Privacy and Security Policy aims to guide the sharing of genomic and related health data in a way that protects and promotes the confidentiality, integrity, and availability of data and services, and the privacy of individuals, families, and communities whose data are shared.

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Data Privacy and Security Policy

Benefits

Shares best practices for promoting participant privacy and security when collecting and sharing data
Facilitates compliance with the obligations and norms set by international and national laws, regulations, policies, and interoperable standards

Target users

Data protection authorities

Publications Documents Videos

Publications

Title	Author(s)	Year
A community effort to protect genomic data sharing, collaboration and outsourcing	Wang, S. et al. Wang, S., Jiang, X., Tang, H., Wang, X., Bu, D., Carey, K., Dyke, S.O.M., Fox, D., Jiang, C., Lauter, K., Malin, B.A., Sofia, H., Telenti, A., Wang, L., Wang, W., Ohno-Machado, L.	2017
The discombobulation of de-identification	Phillips, M. et al. Phillips, M., Knoppers, B.M.	2016

Documents

Date	Title
14 September 2023	Code of Ethics and Community Conduct (CECC)
1 August 2019	Data Privacy and Security Policy (v2.0)
26 May 2015	Data Privacy and Security Policy (v1.0)