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Framework for Involving and Engaging Participants, Patients, and Publics in Genomics Research and Health Implementation
Helps institutions evaluate their engagement strategies with research participants, patients, and the public
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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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
Image summary: The principles and aims of the Engagement Framework guide responsible sharing of genomic and health data.
THEME
CATEGORY
TYPE
STATUS
Work Stream
LATEST VERSION
v1.0
Product Leads
- Madeleine Murtagh
- Mavis Machirori
Staff Contact
Community resources
Dive deeper into this product! Effective engagement of participants, patients, and the public in genomic science provides better and fairer outcomes for all people. The Engagement Framework provides key considerations for engaging different stakeholders in genomics research, health implementation of genomics, and genomic data sharing. To help those involved in genomic activities reflect on their engagement strategies, the Engagement Framework contains a series of questions organised into four categories: fairness, context, heterogeneity, and recognising tensions and conflicts. When done well, engagement practices can enhance trust, support understanding of diversity, and increase the value, relevance and quality of genomic science.
ICGC ARGO
Don't see your name? Get in touch:
- Megan Doerr
Sage Bionetworks - Clara Gaff
Melbourne Genomics Health Alliance - Yosr Hamdi
Institut Pasteur de Tunis - Jacob Shujui Hsu
National Taiwan University - Amalia Issa
McGill University / Université McGill - Amber Johns
ICGC ARGO - Yann Joly
Centre of Genomics and Policy - Mavis Machirori
Ada Lovelace Institute - Mogomotsi Matshaba
Botswana-Baylor Children's Clinical Centre of Excellence - Anna Middleton
Wellcome Connecting Science, Wellcome Genome Campus - Richard Milne
Wellcome Connecting Science, Wellcome Genome Campus - Andrew Morris
University of Edinburgh - Madeleine Murtagh
University of Glasgow - Angela Page
Broad Institute of MIT and Harvard - Christine Patch
Wellcome Connecting Science, Wellcome Genome Campus - Sharon Plon
Baylor College of Medicine - Pedro Rondot Radío
Angel H. Roffo Institute of Oncology - Sharon Terry
Genetic Alliance - David Torrents
Barcelona Supercomputing Center
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