A University of Rochester bioethicist is calling for enforceable international rules on editing human embryos before the technology moves from research toward clinical use, according to a new university account of her work.
Lainie Friedman Ross, who chairs health humanities and bioethics at the University of Rochester School of Medicine and Dentistry, and coauthor Emily Packard Dawson argue in a JAMA viewpoint for scientific and ethical standards backed by credible international oversight.
The authors distinguish gene changes in a patient's own cells from changes in eggs, sperm or embryos that could be passed to future generations. The first approach is already used for some serious diseases. The second would affect people who cannot consent to the change and may carry effects scientists cannot yet predict.
Treatment and inherited changes are different
The Food and Drug Administration approved the gene-editing treatment Casgevy for sickle cell disease in 2023. It uses CRISPR-based editing of a patient's blood-forming stem cells to help prevent painful complications. Those changes are made in the treated person's cells and are not intended to pass to children.
Editing embryos or reproductive cells would instead alter genetic material that could be inherited. Ross said a change aimed at one trait may have other effects because genes interact in ways researchers do not fully understand. Editing can also affect sites other than the intended target.
The Rochester account uses a possible link between a gene associated with intelligence and anorexia nervosa to illustrate that risk.
Private fertility companies already market embryo screening for traits such as height and intelligence, the university account said. Screening embryos to select among them is different from editing an embryo's DNA. Ross and Dawson are concerned that commercial interest could push toward editing before safety, ethical and oversight questions are resolved.
Debate over research and oversight
Ross and Dawson say genetic research and commercial interest are moving faster than the basic science and oversight needed to evaluate heritable editing. They call for a framework that considers both the potential benefits of embryo research and the moral status of embryos.
Ross said U.S. limits on federally funded embryo research have left much of the work to private interests. She contrasted that approach with the United Kingdom's more structured regulatory framework for embryo research. National rules are uneven, and the authors say international oversight would help prevent commercial and clinical activity from outrunning evidence.
Research academies in the United States and United Kingdom have developed shared principles and standards for gene editing, the Rochester account said. Ross and Dawson now want those standards implemented and credible international oversight built around them.
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