Gene-edited babies who might be born in the future should be monitored over the course of their life. These patients’ physical, mental, and social health monitoring should be coordinated by clinicians in ways that anonymize patients’ data for privacy protection but also allow for national and international aggregate evaluations. Transnational monitoring efforts should focus on safety and efficacy, social and disability justice, what constitutes the standard of care, and how best to promote both access to care and social and genomic research and innovation. In addition, effective and binding mechanisms for stopping or limiting uses of gene editing technology should be developed.
Dr L and her team are germline editing researchers who are about to begin work with Dr M at her university hospital fertility clinic on a germline genome editing pilot protocol approved after extensive public comment and review by ethical, safety, disability and social justice, and regulatory bodies. Four couples in which both partners are carriers for well-studied severe monogenic conditions have given their consent to be involved in the clinical trial.
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