How Should “CRISPRed” Babies Be Monitored Over Their Life Course to Promote Health Equity?

Abstract

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.Case 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.Later in the week, Dr L, Dr M, and the couples will be meeting with Dr C and Dr D, who have been designated as the long-term monitoring physicians for physical and mental health, respectively, for any children born from this trial.They will also be meeting with Dr Q, a bioethics specialist, who will be monitoring the social aspects of follow-up care.The purpose of these meetings is to debrief with clinical teams about what kind of follow-up monitoring, care, and feedback are appropriate.What should they cover in these meetings?How should babies who underwent germline genome editing be monitored over the course of their life?Commentary The world's first known "CRISPRed" babies, Chinese twin girls, were born in October 2018 after researcher He Jiankui used clustered regularly interspaced short palindromic repeat (CRISPR) technology to disable a gene called CCR5 in their genomes so as to