As gene-editing tools like CRISPR move from labs into clinics, scientists are no longer just treating patients. In some cases, they are making permanent changes that could be passed down to children, grandchildren, and generations beyond. This raises a question bioethicists are still struggling to answer: how can anyone consent to a genetic change before they are even born?

Germline editing (altering DNA in eggs, sperm, or early embryos) differs from more common somatic editing, which affects only the patient being treated. Somatic therapy changes a patient's cells. A germline edit changes the genetic code that could be passed to future descendants of that embryo, none of whom exist yet and none of whom can be asked.

The debate gained global attention in 2018, when Chinese scientist He Jiankui announced the birth of twin girls whose embryos had been edited to resist HIV, a move condemned internationally as reckless and premature. The case exposed how unprepared existing ethical and legal frameworks were, and many countries, including the U.S., the U.K., and many E.U. countries, now restrict or ban heritable human genome editing in clinical use.

Supporters argue that for severe, well-understood genetic diseases, editing an embryo could prevent such diseases from being passed down through generations, meaning inaction is not a neutral choice either. Critics counter that this misses what makes consent meaningful in the first place. Traditional medical ethics rests on a patient agreeing to a risk for their own body, while germline editing breaks that link entirely. Future descendants have no way to weigh in, reject the change, or even know it was deliberate rather than inherited by chance.

Parents already make medical decisions for children too young to consent, but many of those decisions are limited to one person's life. Germline edits are different. A single decision in a lab today could shape a family's genetic makeup indefinitely.

As the technology becomes cheaper and more precise, the question is becoming less theoretical and more urgent. Should society create safeguards—through regulation, waiting periods, or limiting edits to only the most severe diseases—before the genetic starting point of future generations is decided for them?

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