The Sound of Silence: Innovation, Marginalization and New Human Genomic Technologies

In recent years, there has been a dramatic rise of innovation in human genomic technology. This has been most notably seen in new and effective genomic therapeutics in CRISPR-Cas9 genome editing, such as CASGEVY, and well as in other interventions such as OTOF-gene therapy for congenital deafness. Innovations in the methods and tools of genomic research have also given rise to new developments in terms of polygenic screening, AI in genomics, and social and behavioral genomics. While such innovation offers unprecedented potential for treating diseases and increasing knowledge, they also pose substantial ethical and social risks, especially for traditionally marginalized and vulnerable groups. The extent to which such risks are addressed will depend largely on whether innovations in genomic technologies are matched by social, political, or economic innovations that include these groups in ethical and governance debates. To the extent that they are not, silence itself will be telling.

This Research Topic will aim to do two interrelated things: i) assess and evaluate the various ethical, social, economic (and other) risks that are emerging or re-emerging for vulnerable and marginalized groups, particularly those historically harmed or ignored in previous medical and health-related research and intervention; and ii) assess and evaluate the degree that such potentially vulnerable and previously marginalized groups are genuinely involved in the debates and governance on addressing the aforementioned risks. In so doing, we hope that potential benefits of these innovations in genomics will be further supported where effective safeguards are in place while some potential benefits may be considered too problematic in its impact on vulnerable and marginalized groups to be encouraged, supported (e.g. with public funds) or even permitted in some (or any) circumstances.

Finally, we hope that the collection will offer insights to the increasingly urgent question on how to navigate disagreements in reasonable and respectful ways, to find ways to reduce, or not exacerbate, distrust and polarization between the different groups involved.

This Research Topic invites interdisciplinary contributions that explore the social, ethical, political, and economic dimensions of emerging human genomic technologies, with a focus on their impact on historically marginalized and vulnerable communities. We welcome original research, critical reviews, case studies, and theoretical analyses that examine both the risks and the potential of innovations such as new and emerging genomic interventions, polygenic screening, AI in genomics and controversial forms of research, such as social, behavioral and beyond. Authors should aim to assess not only the direct consequences of these technologies, but also the extent to which inclusive governance, meaningful participation, and equitable benefit-sharing are being realized - or overlooked - in current genomic research and policy.

Specific themes & questions to be explored:

• Representation and Inclusion: To what extent are marginalized groups included in shaping the ethical, legal, and policy frameworks governing genomic innovation?
• Consent and Community Engagement: How are consent, autonomy, and community values respected in genomic research and intervention?
• Equity and Access: Who benefits from new genomic technologies? Are vulnerable or historically excluded populations being left behind or disproportionately burdened?
• Silences and Omissions: What is left unsaid in debates on genomic technologies? Whose voices are missing, and why?
• Historical Context: How do past injustices in medical research inform current trust or mistrust in genomics?
• Governance and Responsibility: Are current oversight mechanisms adequate to protect vulnerable populations? What social or political innovations are needed?
• Public Dialogue and Polarization: How can we foster respectful, inclusive debate in the face of moral disagreement and growing public skepticism?

Article types and fees

This Research Topic accepts the following article types, unless otherwise specified in the Research Topic description:

• Brief Research Report
• Community Case Study
• Conceptual Analysis
• Data Report
• Editorial
• FAIR² Data
• General Commentary
• Hypothesis and Theory
• Methods
• ... View all formats

Articles that are accepted for publication by our external editors following rigorous peer review incur a publishing fee charged to Authors, institutions, or funders.

Article types

This Research Topic accepts the following article types, unless otherwise specified in the Research Topic description:

• Brief Research Report
• Community Case Study
• Conceptual Analysis
• Data Report
• Editorial
• FAIR² Data
• General Commentary
• Hypothesis and Theory
• Methods
• Mini Review
• Opinion
• Original Research
• Perspective
• Policy and Practice Reviews
• Policy Brief
• Review
• Study Protocol
• Systematic Review
• Technology and Code

Keywords: genomic technology, innovation, marginalized groups, policy frameworks

Important note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.