Podcast: The CRISPR children - episode 3

The 'CRISPR babies' are now around three years old. Checking in on how they might be and assessing the way they came to be .

Like Comment

To go along with my story The CRISPR Children in Nature Biotechnology, I am producing a rolling series of podcasts. This episode is a chat with Dr. Eben Kirksey, an anthropologist at Deakin University, which has campuses in and near Melbourne, Australia. 

He has written a book called The Mutant Project, Inside the Global Race to Genetically Modify Humans.  It's dedicated to Lulu and Nana, two of the three children who are known to have had their genomes edited before their birth. 

You can listen to the podcast here. 

And it's also on Apple Podcasts, Google podcasts, Spotify, Amazon Music and wherever else you stream your podcasts from. 

It's part of a rolling series called Conversations with scientists.

There is a page with some background reading here

Here is episode 1, a conversation with Dr Kiran Musunuru of the University of Pennsylvania and author of the book The CRISPR Generation: The Story of the World's First Gene-Edited Babies.

Here is episode 2, a conversation with Dr. Rudolf Jaenisch from the Whitehead Institute for Biomedical Research. 

Transcript of podcast 

Note: These podcasts are produced to be heard. If you can, please tune in. Transcripts are generated using speech recognition software and there’s a human editor. But a transcript may contain errors. Please check the corresponding audio before quoting.

The CRISPR children – episode 3

Eben Kirksey

For me, CRISPR reveals that earlier ideas about the power of DNA to make us who we are might be sort of oversized.

Vivien

That’s Dr. Eben Kirksey, an anthropologist at Deakin University, which has campuses in and near Melbourne, Australia. Hi and welcome to Conversations with Scientists, I’m Vivien Marx

Eben Kirksey wrote a book called The Mutant Project. It’s an important read. It’s dedicated to Lulu and Nana, two of the three children whose genomes were edited before their birth.

The 'CRISPR babies' were born in 2018, they are now toddlers. This is part 3 in a podcast series called The CRISPR Children about how these children are, to try and understand how they came about and to try and collect some background on them, any health risks they might face due to the gene-editing.

There is certainly a lot of rumor and secrecy swirling around them. I published an article called The CRISPR Children in Nature Biotechnology, it’s a piece I have been working on for three years. I just wanted to find out how the children are and according to sources I can’t name: the children are doing ok. It’s hard to assess the potential health implications gene-editing has and the story and other podcast episodes go into more detail that.

In reporting the story I was surprised to find that a lot of scientists just didn’t want to talk with me. It’s unusual given how much uproar there was over these gene-edited children when the news broke about them in November 2018. But fortunately a number of people did speak with me. I am grateful to them and to my editors at Nature Biotechnology who have been supportive of this project.

In the notes to the show you will find links to that piece and to a list of some articles and videos on this subject and I hope to keep curating that.

This episode is with Dr. Eben Kirksey, an anthropologist. His book The Mutant Project presents his thoughts on many aspects of gene-editing. The kind of gene-editing that is not heritable, that’s somatic gene-editing. And it’s about heritable gene-editing, the kind that was performed in China that led to three gene-edited children with genomic changes made in the lab and that would be passed down to their children if they later decide to have any. There’s Lulu and Nana and a third child, whom I call Amy.

Eben Kirksey [2:35]

We're living through a moment that's very much analogous to the birth of the first so-called test tube baby Louise Brown. I think some of the parallels are the ways the very same language was used to describe her birth and their birth, people called her a Frankenbaby. 

 Vivien

Louise Brown was born on July 25,  1978. In a book about her that she co-wrote, Louise Brown says she got her first marriage proposal when she was five days old. It was one of four hundred letters her mother received after she had given birth to her daughter and was still at Oldham Hospital in Lancashire in England. Louise Brown’s parents were invited to talkshows and traveled around the world. So many people were interested in seeing Louise Brown, the first test-tube baby. Headlines screamed “The Lovely Louise” a “Miracle called Louise” “The baby of the century” and “Super babe”

More mail poured into the Brown household. Lots of fan mail but there was also hate mail. Some people called Louise Brown Frankenbaby. Lulu and Nana were also called Frankenbabies. But none of them were humanoids from the lab of a fictional scientist called Viktor Frankenstein. They are real and deserve their privacy and dignity. They deserve our interest and empathy and thoughtfulness.

The reactions to the gene-edited babies, now children around three years old, have been entirely different from the reactions to Louise Brown, who herself is an adult. There are many reasons for this difference.  Louise Brown’s genome was not edited before her birth. Lulu and Nana’s genome was edited before their birth. And there are many other differences between the births. Here’s Eben Kirksey.

Eben Kirksey [4:30]

And I think one key difference between the birth of Louise Brown and the birth of Lulu and Nana is that Louise Brown was a public figure from the moment she was born. There were journalists there.

You know, a fire alarm was pulled and somebody snatched her picture amidst all the chaos. And for me, the privacy concerns about these two babies, the secrecy both around the initial experiment and also around the condition of the two children now, is vitally important, you know.

These children now, you know, actual human beings did not ask to be born into this situation. They're living in a situation not of their own choosing. Their parents consented to it, but they did not. And, you know, it's an open question. You know, if I were a parent, the question would be, how, how and when would I inform my child that you're different, that you're special, that you've had this procedure done that makes you different from all of your peers. Like when do you have that conversation? And I think, you know, right now, the parents. But I think the government as well is invested in preserving the privacy of these individuals.

And I think those privacy concerns must be held together with the desires of the international scientific community that wants to know. You know, there is an intense curiosity about the health and well-being of these children from the public, from the scientific community. But I think it would be wrong to turn these  children into lifelong experimental subjects. And of course, on this, the controversy. You know, you've seen quite prominent scientists weigh in and be insistent that access to specimens from these children be granted to senior scientists. And I think at this point, you know, recognizing the rights of the parents to refuse, you know.

Vivien

Privacy is paramount, of course. In his book Eben Kirksey talks about the parents of these children, about the lab of Dr He Jiankui responsible for bringing about these children. And a third girl, who is the daughter of different parents. I call her A my. None of these names are the real names.

As I mention in other podcast episodes it’s likely that the intended edits didn’t quite work. The girls are most likely genetically mosaic, some of their cells contain purposely altered genes and some do not. And I asked some scientists how one might be able to tell the parents and later the children when they are grown about any risks they might run into because of this mosaicism and because of the gene-editing more generally. It’s not easy to assess.

Eben Kirksey says that at one point the children will probably be told that they are different from other children. He was a participant in the conference in Hong Kong in November 2018 when He Jiankui presented the research in his lab at Southern University of Science and Technology in Shenzhen China that led to children. The news about the children’s birth caused an uproar, also in China.

Eben Kirksey [8:40]

You know what we're seeing on WeChat and Weibo, which is another important social media platform and even conventional print media that has archives on the Internet. Government censors are removing stories and posts as quickly as they appear. So I've had a research assistant that's been working with me. You know, just in the last couple of weeks and in the last couple of months, the hashtag I'm actually going to forget exactly which hashtag had so many hits. But one had 1.8 billion hits on Weibo.

Vivien

Whoa.

Eben Kirksey
But if you look at that at that hashtag, it only indexes things that go back the last couple of weeks. So the hashtag is still there, you can still see traces that, you know, a lot of people cared about this. But there's sort of this vanishing memory.

My research assistant found this one very self-reflexive post about a month ago now. This was before the news broke about the sentencing. And it was just kind of open rhetorical question. Does anyone remember Doctor He? What has become of the two babies? You know, that post has gone too now.

Trying to reckon with the ephemeral memory of this moment is for me, a really interesting cultural phenomenon. How memory is being actively managed and curated. There's an opacity to the process. You know, this really speaks to the broader issues in China relating to censorship and what is knowable, what can be collectively remembered. So I think it is going to be very interesting going forward.

 Vivien

He Jiankui is in jail as are two members of his lab. He didn’t work in complete isolation. There were people in China and elsewhere who knew about the work and the plans of Dr He.

Eben Kirksey [11:00]
Dr. He definitely had some very powerful backers within the Chinese Communist Party. And he worked with them. He gave them foreknowledge in the same way that he gave the Associated Press foreknowledge of the birth and planned a release very much with blessings from important political factions in Beijing.
As a speaker at the summit, I watched kind of the public takedowns emerge in real time. So one of the very important social media outlets in China is WeChat. It's sort of a hybrid between maybe like Facebook Messenger and sort of more public walls of Facebook. And in the first few hours, members of the established Chinese scientific community started issuing very public takedowns, addressing point by point deficiencies that they saw in the experiment.
You know, many people pointed to the fact that this was a technique that many people knew how to do, but that others were proceeding with more prudence and caution because they were very well aware that society was not ready for this. That there wasn't a broad consensus about if it was reasonable to move forward, what a good genetic target would be.

But you know, really, I think a lot of people were pointing out that, you know, the public wasn't educated on this and hadn't been brought along with these latest advances in science. And I think it's a much broader lesson to the scientific community at large.

In 1958, an influential philosopher named Hannah Arendt, pointed out that, you know, scientists were already starting to imagine what she called future man. You know, taking genes from people of demonstrated ability, combining them in a test-tube and, you know, producing, you know, these new since synthetic humans or future man.

And she insisted that decisions about how to deploy technologies, powerful new technologies, whether they're military technologies for nuclear weapons or technologies that could be used to redesign the human species, that these aren't decisions that should be left to scientists alone. And, you know, I think with new nuclear scientists, we saw sort of after the fact a recognition, you know, we need to work on new multilateral legal instruments. We need to work on new ways of governing this emergent technology. And I think, if anything, this experiment by Dr. He has produced a similar reckoning.

Chinese society was not ready for this. The English speaking world was not ready for this. But but it's catalyzed this global dialogue with the WHO Committee, different national legislatures, different sort of administrative procedures being put in place all around the world to try to carefully work through the necessary legal, ethical and social questions as we think about, you know, what this technology can do. But also should we use this technology to do to do new things.

Vivien

Perhaps this experiment is asking society at large this question that crops up regularly in science and technology: should we do what we are, or some of us are, capable of doing. As with most of these types of questions, it’s one with layers. And there are layers to the answers, too.

In his book, Eben Kirksey writes about HarMoniCare Shenzhen Women’s and Children’s Hospital, which he visited. This hospital’s general manager had apparently approved Dr. He Jiankui’s experiments.

Eben Kirksey describes in his book a hospital floor devoted to--as it was called on its website at the time “American medicine and only for you.” HarMoniCare Medical is a group of hospitals, devoted to quote “high end maternal and child health.”

There is some indication that some of the experiments by the He Jiankui lab took place at HarMoniCare. The hospital denies this and it issued a statement that it “never participated in any clinical operation related to the gene-edited babies incident” as my colleague at   Jon Cohen reported in a great article called ‘Inside the Circle of Trust’ published in August 2019.

The hospital also says the experiment did not have ethical approval. There are documents showing signatures indicating ethical approval by the hospital, there’s a signature by a HarMoniCare administrator. The hospital says the documents are forged. Truth? It’s hard to know.

But the experiments happened. And there are children who resulted and who are growing up, the first children with genomes edited before their birth. Over this experiment, He Jiankui and two members of his lab had been sent to jail. The sentencing was made public on Dec 31, 2019. He was likely detained some time before the trial. 

Eben Kirksey [16.35]

It was not an open, open trial. As I understand, defendants have an opportunity to either have a public trial or not. And in this case, a decision was made to keep the trial private. I think it's at the discretion of the defendant. And yeah, I mean, the Chinese judicial system can detain people up to six months without charging them.

There's various different kinds of detention practices that are used. And in this particular case, you know, Dr. He was being held while they sort of evaluated the different charges and made a decision as to whether or not to press charges. So, yeah, it seems like, you know, he's going to be serving three years from the time of sentencing.

And it seems like the other two individuals are kind of getting some time served, knocked off the sentence. But I understand that he's serving the time frame from sentencing. But during the pre-trial detention stage, there's pretty broad investigative and detention authorities that the government has.

 And there's been legal reforms in recent years in China aimed at increasing the transparency of just that pretrial detention. I think one notable recent reform is that it is limited to six months. But yeah, there's still a lot of problems with the system that are very you know, it's a very different system than ours where we would have ready access to a lawyer and access, you know, an ability to communicate with family members. I'm mostly relying on some work by an Australian legal scholar based in Melbourne. So she's written a couple of articles that kind of framed these recent reforms to the judicial process in China.

Vivien:

Chinese authorities did apparently compile a report about the events. My queries asking about that report are not being answered, so for now that report is not public. The report possibly played a role in the way the trial unfolded and ultimately how it ruled in this case about experiments that led to gene-edited children. But the trial was not public. Which makes it hard for a journalist like me. To Eben Kirksey assessing this non-public trial is part of being an anthropologist.

Eben Kirksey [19:40]
As an anthropologist, you know, my aim has been to kind of understand socio-legal traditions in cultural and historical context. I don't presume that, you know, that there is this kind of universal Western norm that, you know, like that we treat the Chinese system as deficient because it has different procedural standards and evidentiary standards. So, yes, it's something I explore at some depth in the book.

Vivien

Germline gene-editing as was performed by He Jiankui is now not permitted in China and it’s outlawed now in other countries and had been prohibited all along in a number of them. Germline gene editing is not considered ethically permissible in most countries either.

In China a law was passed that explicitly prohibits it. Before that law, it seems there was a bit of a gray zone in China. One day, tinkering with germline editing might be both legally permissible and ethically acceptable in certain clearly circumscribed circumstances. That day is not today.

As Eben Kirksey explains, He Jiankui who did these experiments, had embraced an entrepreneurial spirit, a spirit of innovation and disruption that pervades Silicon Valley and also Shenzhen, China.

He Jiankui came to the US as a student, completed his PhD research at Rice University and then was a postdoctoral fellow with Stephen Quake at Stanford University. Dr. Quake founded a number of companies including Fluidigm, Moleculo and also Helicos Biosciences. He Jiankui licensed the Helicos technology and built a company around it called Direct Genomics. Quake was on the board of Direct Genomics. Or not, Dr. Quake apparently denies that he was.

Stephen Quake also said to Science and New York Times reporters he had heard about the plan by his former mentee to undertake experiments with gene-editing human embryos, implanting them and taking the pregnancy to term. It’s not quite clear when he heard this. Dr. Quake has been quoted as saying he tried to dissuade He Jiankui from these experiments. In April of 2018, apparently He Jiankui told Dr Quake and a few others that a woman was pregnant. Embryos had been gene-edited with CRISPR, then implanted.

He Jiankui had big plans related to heritable gene-editing. Those plans involved Dr John Zhang, who founded a company called New Hope Fertility, based in New York. Zhang is a friend and kind of a mentor to He Jiankui.

In his book Eben Kirksey talks about the plans by these two men. John Zhang and He Jiankui had undertaken trips together, for example, to Hainan an island, as Kirksey writes, known for beach resorts and medical tourism. It has a special zone set up by the Chinese authorities to promote and support cutting-edge technologies in medicine. Dr. He Jiankui and Dr. John Zhang had raised money together, planned a fertility clinic to offer CRISPR babies to paying customers, babies with genomes edited before their birth.

John Zhang has made headlines with his activities with in vitro fertilization. At New Hope’s clinic in Guadalajara, Mexico his team performed mitochondrial replacement therapy. There was a pregnancy that led to the birth of a baby boy for a woman who had lost two children—an eight-month old and a six-year-old—to a mitochondrially transmitted disorder. 

New Hope offers in vitro fertilization services, also pre-implantation genetic testing. That might be for conditions due to changes in a single gene. Hemophilia A and B, Huntington Disease and Fanconi Anemia. Clients can also select the gender of their future children pre-implantation by removing cells from a fertilized embryo a few days after fertilization in the lab. Gender and something called “embryo quality” are assessed. And quote “Only high quality embryos of the desired sex are transferred” it says on the web site.

 Gene editing, according to a promotional video by He Jiankui, could be applied to diseases such as familial cancers or muscular dystrophy. And this had been the plan of the two men: a clinic to offer CRISPR babies, probably based in Hainan, China to prevent conditions in future children. To my knowledge the plans for this company have been put on hold. Back to He Jiankui and entrepreneurship. Here’s Eben Kirksey:

Eben Kirksey [24:30]

I think that this case you see a number of different traditions of ethics and values coming into conflict. And I think fundamentally you have someone who's operating in a system that very much values innovation, disruption. These are values that have emerged from Silicon Valley. You know, he was trained as a post-doc at Stanford, brought back to Shenzhen, a city known for speed and innovation, with the idea that he would kind of bring that entrepreneurial culture to China.

Shenzhen has a very long history of doing things that that are kind of at the cutting edge. And if you look way back to the reform and opening period, when China first started flirting with capitalism, Shenzhen was the official experimental zone. You could do things with capitalism  that were not permissible in other parts of China. There is a long tradition of going after results in Shenzhen and only looking to Beijing for post-hoc approval after you already have results. And JK was very much operating within that tradition, very much had support of different parts of the government on a local, regional and national level. But I don't think he really anticipated the power of older norms and values.

During China's Cultural Revolution of Chairman Mao, there was a big push to secularize the country, a big push to get past religious values that were seen as being superstitious. The idea of medical morality in China is very much a fusion of Marxist principles, socialist principles, as well as older principles and embedded in a diversity of religions from Buddhism, Taoism. And one of the things I think that separates the Chinese tradition of medical morality from a Western bioethical tradition is different foundational roots. So I think in Europe and in the US, bioethics is grounded in Christian norms. In the US there is a lot of handwaving every time someone does research with human embryos or stem cells. In China there isn’t that same concern. We also dealing with a country that dealt with many forced sterilization procedures. By many, literally millions of forced sterilizations during one-child policy, forced late-term abortions. And families were forced to give up children during One Child policy.

Vivien

In his book ‘The Mutant Project’ Dr Kirksey retraces He Jiankui’s training in China, visits the village where he grew up. He Jiankui is sometimes abbreviated as JK.

Eben Kirksey [27:30]
And, you know, JK actually was born in this era. The one-child policy wasn't uniformly enforced. He was born as the second child in the family. In rural areas like where he grew up, there was an uneven enforcement of this policy

But I think with this experiment, all sorts of different values came into conflict. So very much this spoke to these ideals of speed and innovation, which drive the economy of Shenzhen. But it was sort of a moment of reckoning, a moment of reckoning with the old guard of the Communist Party, but also with a Chinese public who didn't have any concerns with earlier embryo editing experiments that were pre-clinical.

But all of a sudden when there was an actual birth,   the public was outraged. And again, I think this speaks to differences between a Christian tradition of bioethics and a Confucian or Taoist principle where the person emerges at birth rather than at the moment of conception.

So in April 2015, when Dr. Huang at Sun Yat Sen University used CRISPR for the very first time in non-viable human embryos, the Chinese public didn't even notice really. From talking to many people in broad sectors of society, I found few people who even remember that earlier moment.

But in contrast, you know, an experiment that put the lives and health and well-being of two actual human babies in jeopardy, that generated widespread public outrage.

So you had the old guard of the Communist Party,  who very much value norms related to prudence and caution doing the right thing at the right moment. Those were coming into conflict with the new innovator class, very much in power and driving a city like Shenzhen. But I think it's these earlier religious traditions and values that really have been reanimated in recent years, even after the Cultural Revolution. You know, that big push to kind of stamp out what was seen as not modern or mystical thought.  You know, that's very much still there. So this experiment, you know, produced all kinds of debate and reckoning just amongst these different value systems.

Vivien

One important facet of these experiments is HIV. HIV, the virus that causes AIDS matters with these gene-edited children. Because the goal had been to generate HIV-resistant people. They would be resistant to HIV from birth due to gene-editing.

The plan was to make a genetic change to confer HIV resistance, to alter the C-C-chemokine receptor type 5, the CCR-5 gene, which encodes a receptor on cells that HIV uses as a kind of molecular doorknob. The experiment was supposed to be a test-case for potentially applying germline gene-editing in other diseases. He Jiankui describes this in one of his promotional videos.

One of the children, Nana, might be resistant to HIV because her CCR5 gene was disrupted. But since she is likely genetically mosaic some of her cells have an intact CCR-5 gene. So she might not be resistant. Lulu has one gene-edited allele, not two. And so she is less likely to be HIV resistant. And she too is probably genetically mosaic. So it’s hard to know if they are HIV-resistant or not.

The gene CCR-5 might fulfill many functions in the body and it’s unknown how this might effect Lulu or Nana or Amy. And there may be so-called off-target effects in their genomes.

He Jiankui had recruited couples for this study who are HIV-discordant. The wife is HIV negative and the husband HIV positive and being treated with antiretroviral drugs. The treatment of the men led the virus in their bodies to be undetectable. Individuals were recruited through an organization called BaiHuaLin China People Living With HIV/AIDS Alliance.

Eben Kirksey [32:45]

HIV follows unusual patterns in China that don't necessarily map on to how we understand the disease here. One of the things that China does that's really good is that everybody, for free, is guaranteed HIV tests. If you test positive, you're given free counseling, free drugs for life. But there is a flip side to that. So I interviewed one guy who broke his arm. And any medical problem that you encounter, you have to first report to the infectious disease hospital as a lifelong HIV patient.

And basically, when this guy who broke his arm reported to the hospital, they said, yeah, we can fix your arm, but it's going to take us three months to get a specialist who can come in and work here at the infectious disease hospital and do surgery.

Vivien

Ouch.

Eben Kirksey

So he elected to do medical tourism and then went to Thailand. So pretty much once you have HIV as part of your medical history, that follows you around with incredible stigma. People still routinely lose jobs after colleagues find out that they're positive.

And, you know, it's a very, a situation of intense stigma, too, for openly gay and bisexual people in China. So you can't have a baby if you don't have a marriage certificate and you can't get married if you're gay in China. So, so many men opt for either negotiated relationships with lesbians that are sort of social fictions that everybody knows about or other men who are deeply in the closet aren't even out to their to their wives. So people are navigating these very complicated social realities.

And there are guidelines that prohibit the procedure of sperm washing and fertility treatments for any HIV positive men in China.

Vivien

The couples were recruited for these experiments, which the lab called a clinical trial. But many say there are lots of reasons why this cannot be called a clinical trial, so let’s call them experiments. The couples recruited for these experiments wanted a child, wanted the risk of HIV transmission to be low. Making a child the classic way was either not working for them or they worried about the risk.

Eben Kirksey [35:30]

I went systematically to every sort of leading IVF clinic in Beijing and Guangzhou  and Shenzhen and sort of like ask them, you know, if I was HIV positive, could I have a child here? I was categorically told  no. A procedure that all couples go through when they go through IVF, you have to present your marriage license and you also have to submit yourself for a blood test and.

If you're if you are detected as having HIV, you're disqualified from using any kind of fertility treatment. So the options are either medical tourism abroad or some somehow faking a blood test, which is what was done in this experiment

Vivien

Sperm washing has been the common practice for HIV-discordant couples, it is a way to gently process semen and sperm to remove any HIV particles. Then,  these washed sperm are used for in vitro fertilization.

Eben Kirksey [36:40]
There's new knowledge that has emerged in just the last couple of years where undetectable equals untransmittable. So if you're on an antiviral regimen here, you're getting regular viral load tests, you can make babies the old-fashioned way,

In China, many of the sources who I spoke with said viral load testing was very intermittent and unpredictable. You might get a test and results might not come back for six to eight months, especially if you live in a rural area. So even with this new emerging clinical finding that sero-discordant capital couples can't transmit the virus, if the positive person stays on their regular antiviral regimen. That doesn't work in a context where the medical infrastructure is not providing you with reliable viral load test testing.

But even if you are controlling your virus, you can detect a sero-conversion. So basically, when you're doing a blood test in those fertility clinics or elsewhere, if you know, I went to do a blood test here in the States, what they would actually be looking for is seroconversion, meaning that my body has started to make antibodies to the HIV virus. So that's   what they would be looking for. And those antibodies would still be present even if you were controlling the virus with your antivirals.

Vivien

The couples in this experiment faced a bind. They wanted a child and needed to seek help. In a separate podcast I talk a bit more about this situation with another scientist, Dr. George Annas of Boston University.

As far as one can tell, the experiments in the lab in Shenzhen were stopped. But there are three children whose genomes have been edited before their birth and there’s a need to think about whether they run any risk given, for example, they are genetically mosaic.

In the article in Nature Biotechnology my interviewees talk about this and there is more on this in other podcast episodes. I spoke for example with Dr. Kiran Musunuru of the University of Pennsylvania about that and with Rudolf Jaenisch of the Whitehead Institute for Biomedical Science.

There are companies, it seems, that offer gene-edited babies to couples who wish to have a child and modify their genomes before their birth.

In a search I came across some companies in Cyprus, for example. So did Eben Kirksey.

Eben Kirksey [39:25]
I actually I chatted with somebody like there was a chat box  that emerged. And after I went through a couple of people, the claim that they were offering CRISPR and IVF treatments was it evaporated. But yeah, if you Google CRISPR IVF, I think three or four clinics in Cyprus showed up.

Vivien

According to a World Health Organization report the WHO is setting out to set up ways for people to report possible illegal, unregistered, unethical and unsafe human genome editing research and activities. It is likely going to be hard to police such activities and on a global scale.

For Eben Kirksey, the gene-edited children and the experiments in the lab of He Jiankui at Southern University of Science and Technology, pose a number of questions about gene-editing and genomics. His book The Mutant Project has a subtitle – Inside the global race to genetically modify humans. 

 Eben Kirksey [40:25]
In short, the title is an argument that editing is the wrong metaphor for CRISPR and the technical language describes it best. You know, CRISPR is a tool that produces targeted mutagenesis Refining a text cutting and posting isn't really faithful. like an editor or cutting and pasting isn't really faithful to how the technology works. You know, it produces targeted disruption, it scrambles DNA.

 But in the book, I'm also engaging with, you know, these stories that we have from science fiction, everything from the X-Men, which is about, you know, it's a civil rights parable written by two Jewish-American authors about diversity and difference.

 And I think we're at a moment where there could be these drive to homogenize the human species to really take eugenic science out of, you know its 19th and 20th century origins and put it in the hands of consumers and you know, reproductive clinics that aren't necessarily thinking through some basic questions about values and ethics, but really, you know, catering to whatever demands people might have of their children.

So you want a child with big muscles, target myostatin. And, a doctor might show you pictures like here's your child will look like Arnold Schwarzenegger. But , it's really difficult to tweak a single gene and get some kind of improvement. With myostatin, you will get big muscles if you knock out that gene but you also get a greater risk of heart disease and your organs will be smaller as you grow up.  

Vivien

There are ways gene-editing is being used and might be used. It would seem it’s on everyone, not just scientists, to decide how and when and the question whether it should be performed at all.

 Understanding and coming to grips with the experiments that have led to gene-edited children might enable discussion about what comes next in gene-editing applications to people. Eben Kirksey is situating what happened and gene-editing technology more generally within the question of what it means to be human.

Eben Kirksey [42:50]
For me, CRISPR reveals that earlier ideas about the power of DNA to make us who we are might be sort of oversized.

We're sort of 20 years past the Human Genome Project. There was a lot of speculation that unraveling the code of life would kind of explain the essence of what it means to be human.

And I think for anthropologists who often sit on the other side of the debate from biologists, then, you know, older conversations about nature versus nurture are really finding that, you know, some of the consequential things that people were talking about in the 1990s, you know, related to sexuality, related to cognition and mental illness, turned out to be genetically much more complicated than once was thought. So there is no test for gayness. No, no genetic test. There's no genetic test for most mental illnesses. And the question of, you know, a single gene, a single allele being different in these children, you know, how consequential is that to their identity as humans. So I think you could narrate this as a radical continuity.

You know, there's in my mind, DNA is one important molecule amongst many in a cell that you can tinker with. But what we're really learning from genomics is that genes are embedded in these really complicated genomes and that there might be interactions that we can't predict when you change one thing.  How is that going to impact the organism?

So I think that's I think it's important to be humble, to have humility as we approach the human genome, to not assume that we can really foresee, you know, how one small change might impact an individual person or a group of people.

But I think these fundamental questions about what it means to be human, you know, these are kind of on the line. And, you know, will people get to count as fully human in a legal sense as genes are changed?

There's lots of dystopian science fiction that that points to many futures  where certain kinds of people are discounted, are not didn't fully human. And it could play in both ways. You know, we could see new privileges being given to people who have genes that are modified.

But we could also see, you know, if in particular, experiments go awry and produce monstrous outcomes that were not foreseen, you could you could see a world where a lot of stigma is attached to genetically modified people and genetically modified children. So I think a lot of that was evident in the early comments that emerged on social media. And I think it's still, you know, these images from popular fiction, from science fiction, you know, outsized ideas about the importance of DNA and human behavior and human identity, this all informs how we’re  understanding these first two edited, human children.

 Vivien

That was Conversations with scientists. Today’s episode was with Dr. Eben Kirksey of Deakin University. And just adding this here, because there is confusion about these things sometimes, Deakin University did not pay to be in this podcast. This is independent journalism produced by me in my living room. I’m Vivien Marx, thanks for listening.

(Getty)

Vivien Marx

Journalist , Nature Portfolio