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Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Data Privacy and Security Policy
Guides sharing of genomic and related health data to respect participant and patient privacy and integrity
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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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
Image summary: The Data Privacy and Security Policy aims to protect patient and participant data.
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CATEGORY
TYPE
STATUS
Work Stream
LATEST VERSION
v2.0
Staff Contact
Publications
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Developments in biomedical research require a robust, proportionate, and flexible privacy and security policy, backed by meaningful monitoring and enforcement mechanisms, to ensure appropriate privacy protection of individuals, families, and communities, and data security. The Data Privacy and Security Policy aims to provide principled and practical guidance for sharing 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. The policy framework lists thirteen areas to consider when developing data privacy procedures, and three areas to consider when developing secure data sharing environments.
Date
Title
15 Dec 2023
14 Sep 2023
1 Aug 2019
26 May 2015
Don't see your name? Get in touch:
- Fabiana Arzuaga
Ministerio de Ciencia, Tecnología e Innovación - Qasim Ayub
Monash University Malaysia - Dixie Baker
Martin, Blanck and Associates - David Bernick
Broad Institute of MIT and Harvard - Knox Carey
Intertrust Technologies Corporation - Shu Hui Chen
NIH National Heart, Lung, and Blood Institute (NHLBI) - Jaime Delgado
Universitat Politecnica de Catalunya (UPC) - Ramon Felciano
Digital Alchemy - Paul Flicek
University of Cambridge - Jean-Pierre Hubaux
EPFL - Jamal Nasir
University of Northampton - Pilar Nicolas
Independent Contributor, University of the Basque Country - Jean Louis Raisaro
Lausanne University Hospital - Rosalyn Ryan
Healthfox US Inc - Eva Winkler
German Cancer Research Center (DKFZ) / National Center for Tumor Diseases (NCT)
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