that is also where i place the importance: on the kids and parents. Not the science community nor science councils. Probably why i dont work at a university lab

I am sure you have examples of situations where lower ethical standards led to much faster progress in research.

The good old adage: "you don’t have a gambling addiction as long as you keep winning"

A lot of geneticist are DEEPLY against trying these things. This guy's lucky so far in that his actions haven't caused serious problems, we really don't know how adjusting genetics can backfire, but according to the professionals the risks are very very high.

This is very hypothetical. You could make the same argument about any experimental medical intervention in a child's life. If I had the choice of being born with HIV or an experimental procedure with some (how much?) chance of risk, I'd chose the procedure. I think the criticism of this form of treatment is highly coloured because it sounds like "playing god."

He also did actual time for it and everyone involved was banned from practicing medicine in China, even despite the fact they are the core of CRISPR technology at the moment, they still care enough about ethics to not support this.

Seems like a case of one rogue team of people deciding what they where doing was for the moral good and then the state checking them.

We can still see the initial intentions as being morally good, and the outcome of it being gray but punished; its a balanced perspective; a lot of people here seem to have the impression it was approved by the CPC when it wasnt.

Sure lets just torture all the poor people so a handfull of rich fucks can afford stem-cell-zinfandel, never mind that 100,000 people were tortured and killed, at least we discovered a new anti-wrinkle cream. If you don't think that's what it always is in practice you're delusional. Shit like that is just as likely to cause mass disease or our extinction than it is to discover something useful, perhaps even more so

This is the moral dilemma.

The whole Grimdank universe of just randomly testing things on people to make humans genetically more superior will absolutely improve life for future humans. No question. On paper anyways.

This is pretty much all incorrect. CRISPR didn't have anything to do with Lulu and Nana not being born with HIV, we have known how HIV-infected men can safely become fathers for years now. The standard practice of "sperm washing" and IVF ensured that, CRISPR was completely unnecessary.^1^ The reason the parents accepted He's plan is because in China, HIV positive fathers are not allowed to do IVF regularly.^2^ Chinese often go abroad to get IVF done, but presumably, these parents couldn't afforded it. Not to talk about how He completely disregarded informed consent, giving them 23 complex pages, barely mentioning that they were doing gene editing, representing the whole thing as a "HIV vaccine"^3^

^1^: https://www.pennmedicine.org/news/news-blog/2017/june/how-hiv-positive-men-safely-become-fathers

^2^: https://www.technologyreview.com/2022/04/04/1048829/he-jiankui-prison-free-crispr-babies/

^3^: https://pmc.ncbi.nlm.nih.gov/articles/PMC6490874/#pbio.3000223.ref008

On one hand, crispr isn't safe. And life is not something people have a right to create - that tremendous imposition should be met with a responsibility

On the other hand, life is treated as cheap almost everywhere. If we're going to force people to justify their right to exist, why not take a chance on their genetics to improve the species?

I mean, this was risky science, but not reckless. At some point we need to start fixing our genome, or we're just going to poison ourselves to extinction

Newborns need medical treatments all the time and can't consent. I agree that the inability to consent should encourage non-intervention -- for instance, we shouldn't "correct" intersex infants' genitals -- but there is a limit to this.

HJK: Many years ago, my mother was diagnosed with Alzheimer’s disease, and unfortunately, there are no medicines available to cure it. There are many more people who are suffering from diseases that do not have a cure, so I want to do something to change it.

CT: Can you tell us about the research that you led around Lulu and Nana that was publicized in 2018? It’s been almost six years since this research was shared with the world, how are they doing now?

HJK: Lulu and Nana’s parents are HIV infected patients and they want to have a baby, a healthy baby, a baby that is not worried about HIV any more. So we took the sperm and egg from their parents during the IVF procedure, using a tiny syringe needle to inject the gene editing formula to the fertilized egg, to change one gene, and closed the door that HIV virus used to enter human cell. We then transfer the fertilized egg from the peri dish back to their mother’s uterus, and after several months, Lulu and Nana were born. Lulu and Nana are five years old now and they are healthy and happy just like any other kids in the kindergarten. I am glad that I have helped two families using my science knowledge.

CT: How did you balance the need for progressive gene editing research with ethics and general public perception?

HJK: Science research must be transparent and open, and should be approved by an ethics committee composed of medical doctors, lawyers, patient representatives, and local resident representatives.

CT: Last month, the FDA approved a new CRISPR gene editing treatment, Casgevy, by Vertex Pharmaceuticals and CRISPR Therapeutics, for sickle cell disease. To give context to the audience, sickle-cell is caused by inheriting two bad copies of one of the genes that make hemoglobin. On top of severe symptoms, life expectancy with the disease is just 53 years and it affects 1 in 4,000 people in the US. However, sources are reporting the gene editing treatment price will be $2-3m USD per patient. First, can you tell us your thoughts on this FDA approval milestone and what it means for gene-editing based medicines? And second, do you see a future where the prices for gene therapies will be lowered, making them more accessible to patients?

HJK: The approval of Casgevy is a great success for science, but not for patients. It cost more than 2 million dollars, and few patients will be able to afford it. This drug also has significant side effects including infertility.

CT: Gene therapies aside, what are your thoughts on the current state of affairs of genomics-based reproductive technologies, such as embryo gene sequencing? How do you foresee reproductive technologies being transformed by genomics in the future?

HJK: Embryo gene sequencing such as PGT-P is not ready for clinic application. Many diseases such as diabetes are influenced by hundreds of genes, and we do not have solid science to determine the risk of diabetes by genomic information.

CT:I see. So you think it's still a little bit early for clinic use.

HJK: Yes.

CT: What are your aspirations for the next chapter of your scientific career?

HJK: I believe embryo gene editing can help us to defeat many diseases and improve human health. I have proposed a research project, using embryo gene editing to help prevent Alzheimer’s disease, so our next generation will no longer worry about Alzheimer’s. I am going to do it slowly and cautiously, make sure we comply with all local laws and the international ethics guidelines. We are going to do it in a mouse first and we have no plan to move on to human trials. At every step, we will disclose our progress in full to the whole world and post it in my personal social account on Twitter.

CT: Why focus on Alzheimer's?

HJK: As I said, my mother has Alzheimer's. So personally, I also have some high risk for Alzheimer's when I get old, and maybe my daughters are at risk of having it in the future too, and Alzheimer's has no cure. If this project is successful, perhaps Alzheimer’s disease can be completely eliminated from future generations.

CT: Wow. That would be very powerful if it’s successful – to be able to get rid of a disease in future generations. I have another question. If you could go back in time to 2018, would you have done anything differently?

HJK: I did it too quickly. One thing I did not finish is the health insurance. In the informed consent document we signed with the parents of Lulu and Nana, we agreed to buy additional health insurance for Lulu and Nana. However, after the birth of Lulu and Nana, due to too much negative media attention, no health insurance company wanted to get involved. Now, as an alternative, I am planning to set up a charity foundation in Singapore to raise money to cover any future medical expenses of Lulu and Nana.

CT: Let me know if you have a link to donations for the charity. I'd be happy to share it with interested individuals.

HJK: Thank you. That'd be great.

CT: What are some valuable lessons that you learned over the last few years that you can share with the viewers?

HJK: In the past few years, my wife and daughters were living in a hard time. In the future, I won’t let my family get into the same situation again.

CT: I'm sorry to hear that about your family. Thank you so much for answering all of my questions, Dr. He.

HJK: Thank you.

I understand what you're saying, but his experiment allowed the embryos to come to term and be born as human babies. Scientists have worked with human embryos before and avoided similar outcry by not allowing them to develop further (scientific outcry, not religious). Calling his work an experiment on human embryos ignores the fact that he always intended for his work to impact the real lives of real humans who would be born.

Seems like splitting hairs, at best, for you to claim the three edited human babies who were born from this experiment aren't part of the experiment. He fully aimed to study them and they are still being scientifically monitored.

He also had a bizarre contract he made the parents sign that if they changed their minds they had to reimburse him the financial costs of the experiment.