Opportunities to enhance protections for individualized interventions involving gene-editing
Jeremy Sugarman · 2026
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Description
Gene editing tuned to a single child can now rescue one patient, and, in a secretive case, has already been tied to a death. Jeremy Sugarman examines the safeguards around such one-person interventions in this 2026 paper. A six-year-old girl in Shanghai died after an experimental edit, in a case marked by secrecy, family funding, and a flawed consent process. About a year earlier, an infant in Philadelphia was treated successfully.
The contrast exposes soft spots. These treatments blur the line between care, research, and innovation, and the label decides how much oversight applies. Sugarman works through four fixable areas: oversight itself, reporting of outcomes, how the work is paid for, and consent. The paper argues the field's promise depends on protections catching up with its power.
Catalog record
| CREATOR | Jeremy Sugarman |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 9 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |