Who gets to edit the human genome?: Bioethicists

The prefix

The Nuffield Council — Britain’s independent body for bioethics — took five years on its report. We argued about permissible versus not impermissible for longer than anyone should argue about a prefix. Published July 2018. He Jiankui announced his experiment four months later.

We do not enjoy being right in a way that does not matter.

The science is not the bottleneck. Off-target effects are shrinking toward negligibility. The bottleneck is jurisdiction. The WHO framework has no subpoena power, no inspectors. The Oviedo Convention — the Council of Europe’s treaty on biomedicine and human rights — prohibits germline modification. The US, China, Russia, India, and the UK have not ratified it.

The effective accelerationists frame our caution as cruelty — children born with sickle cell disease every year the committees deliberate. The argument has force. A child in pain is not an abstraction. But sickle cell is the clear case. What about a gene variant associated with 15 percent increased risk of depression? A variant correlated with lower height in populations where height correlates with income? The line between therapy and enhancement is not a line. It is a gradient, and every technology renders it arbitrary. The Global South sovereignty advocates raise the point we find hardest to answer: our frameworks are written by institutions headquartered in London, Geneva, and Washington. The voices setting ethical boundaries are disproportionately from countries that also hold the patents. The sanctity of life position rests on a premise we cannot dismiss: the embryo is the patient, and the patient cannot consent.

Where we concede ground: Our guidelines function primarily within the community that already agrees with us.

What would change our mind: A generation of germline-edited children reaching adulthood healthy, verified by independent genomic surveillance over twenty years.

Read the full synthesis: Who gets to edit the human genome?