Reading Things?- Ethics and Human Research

24 Jan, 2026

Technically, this isn't a Reading Things post; most of what appears in this blog are things I've been aware of for about 5-6 years now, however, today's new piece of reading happens to be this old-ish article speaking out against the atrocities committed by Jiankui He. I also want to make some more progress on 1984, and I'm doing this without a page goal in mind.

For those unfamiliar, this was a rather incendiary event in the world of science, where Chinese biophysician Jiankui He used a (somewhat) newfound gene editing technique on a pair of twins, with little to no ethical approval, and in flagrant violation of informed consent. The twins were born to (I believe?) parents with HIV, and had a pretty high chance of contracting it in their childhood. He edited their genome to delete a part of it, such that it would potentially confer HIV resistance to them. This was a) unprecedented and b) risky for humans. \

Now, to clarify, I by no means support the multitude of issues, most crucially the breach of informed consent, that occurred in the undertaking of this experiment. (I do, however, enjoy going to his Twitter account to see what he's up to and chuckle at it.) \

I do wonder though, at what point does it become unethical to take an egregious step to save (or drastically improve) a life, even when it flouts ethical approval? In an alternate reality, where the fetuses were sure to be born with some debilitating disease, this is the type of research that never makes it to the consent stage, past ethical committees, because the risks are too high. Had I been a parent, would I wait an obscure amount of time for a miniscule amount of hope that there is a drug out there to help my child, or that they qualify to be in a clinical trial that might help? Or do I just bite the bullet and take whatever hope a strange man gives me with unending amounts of risk, because it is definite and it happens now, and there is little worse than what my reality currently is?

It makes sense for ethics committees to not sign off on this, and it makes sense for scientists to not condone this. If we take the guardrails off something as potent as gene editing, it probably doesn't take long for someone to start drifting into building superhumans, or worse, straight eugenics. This is somewhat of an issue with IVF too, the line between a healthy baby and a designer baby is a thin one to toe. I recall saying "The line probably lies in giving your child the best life you can", in a conversation with a friend¹, but when I think of it, in a society plagued with racism and sexism and all sorts of bigotry, is it not a better life to not be a person of colour, or female, or cishet (of course, that isn't something we can select for, yet)?

In cases such as this one, there is a limpid tension between the good of the individual and the good of society. As a scientist myself, it ends up being pretty hard to harmonise the removal of personal suffering with the potential of widespread domino effects throughout the scientific community. I think, personally, a lot of my motivation to interact with science comes from the eventual communal impact it will potentially have. Research is one of those things that probably directly impacts an innumerable fraction of people, if it comes to fruition. When far removed from the situation, it seems unthinkable to do something that would have obviously harmful ramifications. That said, this is potentially one of those situations where admonishment from the outside is far, far more facile than acting from the inside.

As I write this, I realise I have a lot to say, on the availability of research, on critiques and the separation of rationale and emotion, and, finally on consent. I do not, however, have enough information on all of this--I believe this will be tomorrow's reading things (Wow, I did NOT intend for this to become a "Stay tuned for more!". I'd rather just have an informed opinion before I say anything, honestly).

Tell me what you think, or simply say hi!