Policy on Clinically Actionable Genomic Research Results

Provides guidance on establishing policies for returning genomic results to research participants

Overview

There are potential medical benefits to the millions of individuals who are participating in genomics research. If identified genetic risks can be treated in the clinic, such knowledge could be life-changing. But many research programmes lack clear guidance on if, when, and how to return clinically actionable genomic results to their participants in an ethical manner. Developed by the GA4GH Regulatory & Ethics Work Stream (REWS), the Policy on Clinically Actionable Genomic Research Results provides guidance on establishing custom return-of-results policies.

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Policy on Clinically Actionable Genomic Research Results

Benefits

Provides actionable strategies for developing return of results policies
Acknowledges the differing levels of evidence behind the clinical utility of actionable genomic research results, and the complexities involved in returning such information to individuals in an ethically and legally appropriate manner

Target users

Researchers, and clinicians

Publications Documents

Publications

Title	Author(s)	Year
Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries	Richard Milne Richard Milne	2022
An international policy on returning genomic research results.	Lewis, A.C.F. et al. Lewis, A.C.F., Knoppers, B.M., Green, R.C.	2021
Return of individual genomic research results: are laws and policies keeping step?	Thorogood, A. et al. Thorogood, A., Dalpé, G., Knoppers, B.M.	2019