The ELSI of Engagement: Benefits and Challenges to Achieving a Just Genomics

ELSIcon2024 • Panel • June 12, 2024 

Authors:

Corresponding Author: Meghan Halley, PhD, MPH - Stanford Center for Biomedical Ethics

Panelist: Ryan Fischer - Foundation for Angelman Syndrome Therapeutics

Panelist: Daphne Martschenko, PhD - Stanford University 

Panelist: Jennifer L. Young, PhD, MA, MS (she/her/hers) - Northwestern University

Panelist: Audrey Stephannie Maghiro, AB (she/her/hers) - WUSM/Undiagnosed Diseases Network at Harvard Medical School

“Engagement” – the involvement of non-scientists in the design and conduct of research – is a commonly referenced practice in health research. As a broad concept, engagement can take many forms and fulfill different purposes. In translational genomics research, for instance, community </em>engagement is often considered a strategy for incorporating the perspectives of racially and ethnically diverse communities. Patient </em>(and family) engagement, in comparison, is commonly employed specifically in research on rare genetic diseases to increase recruitment and ensure inclusion of relevant outcomes. Other forms, such as stakeholder </em>engagement and public </em>engagement are also referenced as tools for advancing not only research quality and relevance, but also equity and justice in access to the benefits of this research. Engagement has historical roots in social justice movements globally; its focus is on shifting research from an “ivory-tower” activity to one grounded in the social realities of patients and communities. Arguably, engagement has intrinsic value insomuch as it promotes fundamental ethical principles related to research, including social value, transparency, and justice. Proponents of engagement have also argued for its instrumental value based on its potential to ensure study relevance to real-world problems, increase participant enrollment and retention, support the use of patient-centered outcomes, facilitate dissemination of results, and increase trust in science. However, fundamental elements of engagement – including who is engaged, the goals of engagement and scope of engagement activities – remain poorly defined.

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