GA4GH REWG Update (January 2017)
GA4GH REWG Update (January 2017)
We hope you are as eager to continue working toward responsible international genomic and clinical data sharing in 2017 as we are! Below, please find brief updates about each of the REWG task teams as well as details about upcoming events and recent publications.
But first, a few announcements. The 2016 Plenary Report is now live on the GA4GH website and minutes from the REWG portion of the meeting are available here. We hope you agree that it was a truly inspiring and productive event (the pictures say it all!). Don’t worry if you missed it — videos of the full Plenary day are available in the report.
But our work is not over. As we kick off this new year, we also commence a rigorous GA4GH-wide 5-year strategic planning process, led by GA4GH Steering Committee Chair Ewan Birney. Between January and May, our leadership and task team participants will generate a detailed plan for advancing genomic and clinical data sharing and knowledge exchange between now and 2022. Please send us your thoughts!
And now, without further ado, here’s what your colleagues have been up to over the last few months:
The Automatable Discovery and Access Task Team (Chairs: Anthony Brookes, John Wilbanks), a joint effort between GA4GH and IRDiRC, presented a beta version of its ADA-Matrix and accompanying guidance text at the REWG meeting in Vancouver (slides). A workshop was also held in Vancouver to test software that allows users to create an ADA-M profile for a data resource. The Matrix is now available on the GA4GH website. A writing group is developing a manuscript to engage the wider regulatory community about the role of ADA-M in data governance.
The Ethics Review Equivalency (ERE) Task Team (Chairs: David Townend and Edward Dove) published an Ethics Review Recognition Policy on the GA4GH website, to be finalized in early February. It provides essential elements of the ethics review process specifically for multi-jurisdictional research involving health-related data. You can read more about the policy here.
The Participant Values Task Team (Chairs: Anna Middleton, Natasha Bonhomme) has culled early results of its survey, Your DNA, Your Say. They suggest that patients as well as research and biobank participants who are already familiar with genomics are more likely to donate their data than members of the public who know nothing about genomics. The former group is least worried about being identified and about ten percent of them would donate even if identification were high likely. Across the board, respondents are least keen to donate their data for use by for-profit companies. These early results come from 2,000 English speaking respondents. Polish, French, and Russian translations of the survey and accompanying films are in development. The films have been selected for three films festivals: the Raw Science Film Festival in Los Angeles, the Viten Science Film Festival in Bergen, Norway, and New Filmmakers Film Festival in New York.
Are you interested in participating in the GA4GH REWG? See below for ongoing activities and contact REWG coordinator Adrian Thorogood to get involved.
- Mobile Health Consent: (Chair: Megan Doerr) preparing a white paper on best practices for consent, for academic and industry researchers, designers, and coordinators as well as interested members of the general public. We are seeking volunteers!
- Ageing and Dementia: (Chairs: Martin Bobrow, Anna Maki-Petaja Leinonen) reviewing current data sharing and consent practices in dementia research.
- Data Protection Regulation: (Chairs: David Townend, Mark Phillips) developing a detailed commentary on the impact of the EU General Data Protection Regulation (GDPR) on health research; drafting a background article on the possibility of an international data sharing “Code of Conduct” to facilitate compliance under the GDPR, in collaboration with European organisations.
- Ethics Review Equivalency (ERE): (Chairs: David Townend, Edward Dove) developing Practical Guidance for researchers navigating the ethics review process.
- Paediatric: (Chairs: Jan Friedman, Martina Cornel) preparing a white paper on sharing pediatric genomics data with a focus on the clinical setting; developing a set of recommendations based on this analysis.
- Privacy Preserving Record Linkage (PPRL): (Chairs: Petra Kaufmann, Dixie Baker, Bartha Knoppers) discussing both the ELSI and technical aspects of researcher linking of individual-level records while preserving privacy.
- Participant Values: (Chairs: Anna Middleton, Natasha Bonhomme) developing forward-looking Individual Access Policy recommendations to facilitate the provision of individual access to participants by researchers; currently reviewing existing practices for providing participants access to their raw genomic data.
1. AAAS Annual Meeting Boston, Feb 16-20, 2017. REWG Session (Feb 18): “Genomic and Health Data: Global Sharing and Local Governance”
1. Thorogood A, Deschenes St-Pierre C, Knoppers BM, "Substitute Consent to Data Sharing: A Way Forward for International Dementia Research?" Journal of Law and the Biosciences. 2017 (2017) lsw063.
2. Phillips M, Knoppers BM. The discombobulation of de-identification. Nature Biotechnology. 2016 Nov 1;34(11):1102-3.
3. SOM Dyke, et al. Registered Access: A Triple-A Approach. EJHG. 2016. 24, 1676–1680.
4. Townend D, Dove ES, Nicol D, Bovenberg J, Knoppers BM, Streamlining ethical review of data intensive research BMJ 2016 354:i4181.
Stay tuned for new publications, project updates, and the GA4GH 5-year Strategic Roadmap over the coming months. Thank you for your ongoing work, support, and participation in GA4GH REWG — and best wishes for 2017!
Regulatory and Ethics Working Group,
Global Alliance for Genomics and Health