How Should "CRISPRed" Babies Be Monitored Over Their Life Course to Promote Health Equity?
By Charis Thompson,
AMA Journal of Ethics
| 12. 01. 2019
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...
Related Articles
By Elizabeth Dwoskin and Zoeann Murphy, The Washington Post | 10.01.2025
MEXICO CITY — When she walked into an IVF clinic in June, Alin Quintana knew it would be the last time she would try to conceive a child. She had prepared herself spiritually and mentally for the visit: She had traveled to a nearby...
By Rob Stein, NPR | 09.30.2025
Scientists have created human eggs containing genes from adult skin cells, a step that someday could help women who are infertile or gay couples have babies with their own genes but would also raise difficult ethical, social and legal issues...
By Jessica Mouzo, El País | 10.03.2025
DNA is the molecule of life: this double-helix structure, present in every cell in the body and organized into fragments called genes, stores the instructions for making organisms function. It is a highly precise biological machine, but sometimes it breaks...
GeneWatch UK has prepared a briefing on the genetic modification of nature for the International Union for Conservation of Nature (IUCN) Congress in October 2025
The upcoming Congress claims to be “where the world comes together to set priorities and drive conservation and sustainable development action.” A major concern for those on the outside is that the Congress may advance plans to develop and encourage the use of synthetic biology in nature conservation. This could at first glance sound like...