In order for genomics to truly benefit society in a global, fair, and just manner, it is critical to effectively engage research participants, patients, and the public. Developed by the GA4GH Regulatory & Ethics Work Stream (REWS), the Engagement Framework offers those working in genomics research, health implementation of genomics, and genomic data sharing key considerations for engaging stakeholders. The document poses a series of questions to help research and healthcare institutions evaluate if their engagement strategies are inclusive and embody diverse views and perspectives.
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Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation
Benefits
- Lists questions to help research and healthcare institutions evaluate their engagement practices
- Promotes improving the effectiveness, inclusiveness, and benefits of genomic activities
Target users
Researchers, and ethics review committees
| Title | Related Driver Projects and Organisations |
|---|---|
| ARGO Data Platform | ICGC ARGO |
Documents
Contributors
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Get in touch- Mavis MachiroriFramework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation LeadAda Lovelace Institute
- Madeleine MurtaghFramework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation LeadUniversity of Glasgow
- Megan DoerrSage Bionetworks, Seattle
- Clara GaffMelbourne Genomics Health Alliance, Melbourne
- Yosr HamdiInstitut Pasteur de Tunis
- Jacob Shujui HsuNational Taiwan University
- Amalia IssaMcGill University / Université McGill, Montréal, Canada
- Amber JohnsICGC ARGO, International
- Yann JolyCentre of Genomics and Policy, Montreal
- Mogomotsi MatshabaBotswana-Baylor Children's Clinical Centre of Excellence, Gaborone, Botswana
- Anna MiddletonWellcome Connecting Science, Wellcome Genome Campus
- Richard MilneWellcome Connecting Science, Wellcome Genome Campus
- Andrew MorrisUniversity of Edinburgh
- Angela PageBroad Institute of MIT and Harvard, Cambridge, US
- Christine PatchWellcome Connecting Science, Wellcome Genome Campus
- Sharon PlonBaylor College of Medicine
- Pedro Rondot RadíoAngel H. Roffo Institute of Oncology
- Sharon TerryGenetic Alliance, Washington, DC
- David TorrentsBarcelona Supercomputing Center, Barcelona
Driver Projects
| Title | Thematic Area |
|---|---|
| ICGC ARGO | Cancer |
