6 January 2022
Genomic science relies on the individuals who choose to donate their data. These can include participants of research studies and patients who may be directly impacted by research findings. As healthcare systems increasingly utilize genomics for patient care, it is important that the benefits of genomics are global, fair, and just; and the way that genomics activities engage participants, patients, the public, and other stakeholders are core to this aim.
“By bringing together multiple perspectives in genomics and health research, we can ensure the outcomes of our work are valid, relevant and equitable,” said Madeleine Murtagh, Professor of Social Data Science at the University of Glasgow and one of the Project Leads of the Engagement Framework.
Recently approved by the GA4GH Steering Committee, the GA4GH Engagement Framework provides key considerations for engaging different stakeholders in genomics research, health implementation of genomics, and genomic data sharing. The GA4GH Regulatory and Ethics Work Stream collaboratively created this guidance with GA4GH Driver Projects, the Genomics in Health Implementation Forum (GHIF), and members of the Your DNA Your Say Initiative. The development team also prioritized the inclusion of diverse views from individuals with different lived experiences of genomics as patients, research participants, and members of the public. The team’s work has been presented in the preprint paper, “Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation.”
“How we engage stakeholders is vital to our work in genomics,” said Mavis Machirori, Senior Researcher at the Ada Lovelace Institute and a Project Lead on the Engagement Framework. “When done successfully, effective inclusion and engagement practices can build trust, increase the value and quality of genomics, demonstrate the impact of diversity on research, and ensure that genomics research stays relevant.”
The Engagement Framework is built upon the deliberative reflection of the scope, purpose and strategies of engagement. The framework poses a series of questions that are designed to help those involved in genomics activities to appraise and evaluate their engagement strategies. The guidance is structured around four key themes: fairness, context, heterogeneity, and recognizing tensions and conflicts.
– Fairness: questions designed to ensure that research and healthcare occur responsibly and does not exacerbate existing inequalities. For example, “How am I defining my stakeholder groups, and why?” or “Could my study or activity in any way cause or reproduce misconceptions, stigma, oppression, or inequalities?”
– Context: questions designed to ensure the engagement strategy aligns with the particular circumstances under which the research or health implementation will take place. For example, “As the project evolves, is the same engagement activity with the same stakeholders sufficient or does something need to change?” and “Could a different perspective provide more benefit or value?”
– Heterogeneity: questions designed to ensure diversity and inclusivity among and within the groups of people involved in the work. For example, “How can multiple perspectives be heard and incorporated into genomics initiatives?” and “How can these differences shape the purpose of the engagement?”
– Recognizing tensions and conflicts: questions designed to ensure that all stakeholders in genomics are given opportunities to acknowledge and question one another without prejudice or penalty. For example, “How are activities, intentions, and findings being communicated in ways that encourage diverse feedback?” and “How can the initiative support better engagement between stakeholders so that it avoids long-term damage and loss of trust?”
“As a funder of genomics research, Wellcome strives for fairness, inclusivity and equity in the research we fund. This Engagement Framework will be an invaluable tool for us to ensure the work we support meets these important aims and leads to both stronger science and better outcomes for all,” said Audrey Duncanson, Senior Portfolio Manager within the Science division of the Wellcome Trust and a contributor to the Engagement Framework.
“Our development group included a wide range of stakeholder communities. Together, we hope genomics initiatives use this resource to reflect on the strengths and limitations of their engagement practices and decisions,” said Clara Gaff, Executive Director of Melbourne Genomics Health Alliance and a Project Lead of the Engagement Framework. “And through this process, determine whether their community engagement is achieving its intended purpose and impact.”
Future research could explore the use of the Engagement Framework in different contexts, evaluate the outcomes of different engagement models and types of structures that can support that effort.
“Ultimately, engaged genomic science produces better and fairer outcomes for all,” agreed the project leads.