Why Include the Public in Genome Editing Governance Deliberation?

Area of Science:

• Biotechnology
• Bioethics
• Genetics

Background:

• The birth of genetically engineered twins in 2018 marked a turning point in human genome editing.
• International discourse on genome editing governance evolved significantly following this event.
• A shift occurred from multi-stakeholder engagement to expert-driven self-regulation.

Purpose of the Study:

• To reconstruct the paradigm shift in human genome editing governance.
• To advocate for the inclusion of public deliberation in decision-making processes.
• To analyze the transition towards expert-led governance models.

Main Methods:

• Historical analysis of the human genome editing debate.
• Review of policy shifts and expert group recommendations.
• Conceptual analysis of governance models.

Main Results:

• Human genome editing governance transitioned from broad stakeholder input to a model dominated by high-level expert groups.
• This shift occurred with minimal public participation in the decision-making process.
• The current self-regulatory model raises concerns about inclusivity.

Conclusions:

• Inclusive public deliberation remains crucial for ethical decision-making in human genome editing.
• The paradigm shift towards expert-led governance may sideline important societal values.
• Reintegrating public input is essential for legitimate and responsible genome editing governance.