ELSIcon2024: Racial Politics and Health Equity in Genome-Editing Therapeutics

ELSIcon2024 • Paper • June 12, 2024 

Authors:

Co-author: Santiago J. Molina, PhD (he/they) - Northwestern University

Speaker: Melissa Creary, PhD, MPH

This paper examines the racial politics of recent advances in genome-editing therapeutics for sickle cell disease (SCD). We analyze the discourse and ethics surrounding the evaluation and approval of novel SCD therapies to describe prevalent understandings of equity and social justice in genome editing. In particular, we draw on an analyses of meetings of the US FDA’s Cellular, Tissue, and Gene Therapies Advisory Committee on the biologics license application (BLA) for a genome-editing treatment for SCD from Vertex Pharmaceuticals, and debates from the third international Summit on Human Genome Editing, convened by the National Academies of Science, Engineering and Medicine and the Royal Society. We find that while discussions of the ethical, legal and social issues of genetic therapies have adopted the language of social justice, in practice, treatments are expected to have high costs as equity concerns are eclipsed by market forces. Moreover, the concerns of clinical trial participants, patients, and their advocates are framed by scientists as personal anecdotes of recovery, rather than heeding their concerns about access and the persistence of medical and systemic racism. This framing, we argue, limits assessments of the risks and benefits of genome-editing therapies to a technical issue, and excludes social, ethnical, and economic factors. We contend that a more expansive understanding of health justice and antiracism in healthcare is possible if the concerns of patients and their communities are taken seriously and that transparency and accountability are upheld as principles in light of the history and enduring reality of racial inequality.

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