De vraag, eenvoudig gesteld
All the gene editing being used in medicine today changes cells in one person's body and stops there. Germline editing would change an embryo, so every cell of the resulting person carries the change — and so would their children, and their children's children. That difference is why almost every country treats it as a separate question with a separate answer.
Heritable human genome editing modifies gametes or embryos, producing changes present in every cell and transmissible to descendants. It is distinguished from somatic editing in law, ethics and regulation almost universally. Scientific concerns include mosaicism, unintended on-target and off-target changes, the impossibility of meaningful consent from the person affected, and the absence of a way to observe long-term consequences before they are irreversible across generations.
The arguments
- For couples where both partners carry two copies of a recessive disease variant, no embryo can be free of it — preimplantation selection cannot help, and editing is the only route to an unaffected genetic child.
- Preventing a devastating condition before birth may impose less suffering than treating it afterwards, if it can be done reliably.
- A blanket prohibition may push work into jurisdictions with weaker oversight rather than stopping it.
- Some argue that a research pathway with strict oversight is more responsible than a ban that leaves no legitimate route.
- Consent is impossible: the person most affected does not exist yet and their descendants never will be asked.
- Embryo editing is frequently mosaic and produces unintended on-target changes; the result cannot be fully verified before birth.
- Almost every case cited as a justification can be addressed by preimplantation genetic testing or donor gametes, making the genuinely unavoidable cases vanishingly rare.
- The line between preventing disease and selecting for preferred traits is not defensible in practice once the capability exists.
- It would be available first to the wealthy, and heritable advantage compounds across generations in a way no other medical inequality does.
Where the science actually stands
There is broad international agreement that heritable human genome editing should not proceed clinically at present. The WHO expert advisory committee, the US National Academies with the UK Royal Society, and most national bodies have concluded that safety and efficacy criteria are not met and that governance is inadequate. Disagreement is about whether the prohibition should be permanent or conditional on future evidence — not about whether it applies now.
Law and regulation
| Jurisdictie | Positie | Instrument |
|---|---|---|
| United States | No federal statutory ban, but appropriations riders prohibit the FDA from considering applications involving heritable modification, which makes clinical use unavailable in practice | Appropriations rider (renewed annually) |
| United Kingdom | Prohibited for reproduction; embryo research permitted under strict licence up to 14 days with no transfer to a uterus | Human Fertilisation and Embryology Act |
| European Union | Broadly prohibited; the Oviedo Convention bars heritable modification for states that have ratified it | Oviedo Convention; national law |
| China | Prohibited; criminal liability established following the 2018 case | Criminal law amendment and biosecurity legislation |
| Global | No binding international instrument; WHO governance framework is advisory | WHO recommendations, 2021 |
Samengevat ter oriëntatie, niet als juridisch advies; wetgeving verandert en nationale uitwerkingen verschillen. Controleer de geldende wet in het betreffende rechtsgebied.
The 2018 case
In November 2018 He Jiankui announced that he had edited CCR5 in human embryos and that twin girls had been born. The condemnation was near-universal, and the reasons are worth stating precisely rather than as general outrage: there was no unmet medical need, since HIV transmission is preventable by established means; the consent process was found to be deficient; the editing was mosaic and did not reproduce the protective natural variant; and the changes are heritable. He was convicted of illegal medical practice in China and imprisoned for three years.
The episode did more to shape governance of this field than any argument that preceded it.
Unresolved questions
- Whether any future safety evidence could be sufficient, given that the consequences appear across generations.
- Who would legitimately decide — national regulators, international bodies, or affected communities.
- Whether the distinction between preventing disease and enhancement can be held in practice.
- How to respond to work carried out in jurisdictions that do not participate in any framework.
Sources
- World Health Organization · 2021
WHO issues new recommendations on human genome editing for the advancement of public health ↗ - National Academies of Sciences, Engineering, and Medicine · 2020
Heritable Human Genome Editing ↗