Heritable Genome Editing: Who Speaks for "Future" Children?

Area of Science:

• Genetics
• Pediatrics
• Bioethics

Background:

• 80% of rare diseases affect children, with half having childhood onset.
• Somatic gene therapies are in clinical trials for conditions like spinal muscular atrophy.
• Rare diseases pose significant, often incurable, health challenges for pediatric populations.

Purpose of the Study:

• To explore heritable genome editing as preventive personalized medicine for children.
• To examine the ethical implications of heritable genome editing concerning children's right to health.
• To critique global moratoria on heritable genome editing and advocate for responsible international debate.

Main Methods:

• Literature review on gene therapy advancements.
• Ethical analysis of heritable genome editing applications in pediatrics.
• Discussion of policy implications and international scientific discourse.

Main Results:

• Heritable genome editing shows potential for preventing serious childhood diseases.
• Current moratoria may impede ethical progress and scientific advancement.
• Children possess distinct rights to benefit from medical innovations.

Conclusions:

• Responsible development of heritable genome editing is crucial for pediatric health.
• International dialogue is needed to establish ethical guidelines for genome editing.
• Advancing gene therapies respects children's right to health and well-being.