Consent Policy

Provides guidelines for the international sharing of genomic and related health data

Overview

Informed consent is a bedrock principle underlying the ethical conduct of research and clinical practice. The Consent Policy aims to guide the sharing of genomic and related health data in a way that respects autonomous decision-making while promoting the common good of international data sharing. Developed by the GA4GH Regulatory & Ethics Work Stream (REWS), the Consent Policy aims to maximise responsible and respectful global data sharing through the design of consent forms for data collection.

Image summary -

The diagram describes five key principles of the GA4GH Consent Policy

Benefits

Provides translatable best practices to implement informed consent
Promotes lawful and ethical data sharing consistent with a data subject’s consent, authorisation by competent authorities, and applicable laws

Target users

Ethics review committees, and data protection authorities

Publications Documents Videos

Publications

Title	Author(s)	Year
Facilitating a Culture of Responsible and Effective Sharing of Cancer Genome Data	Siu, L.L. et al. Siu, L.L., Lawler, M., Haussler, D., Knoppers, B.M., Lewin, J.H., Vis, D.J., Liao, R.G.	2016