The Mutant Project: Inside the Global Race to Genetically Modify Humans

by Eben Kirksey

An anthropologist visits the frontiers of genetics, medicine, and technology to Whose values are guiding gene editing experiments? And what does this new era of scientific inquiry mean for the future of the human species?"That rare kind of scholarship that is also a page-turner."—Britt Wray, author of Rise of the NecrofaunaAt a conference in Hong Kong in November 2018, Dr. He Jiankui announced that he had created the first genetically modified babies—twin girls named Lulu and Nana—sending shockwaves around the world. A year later, a Chinese court sentenced Dr. He to three years in prison for "illegal medical practice."As scientists elsewhere start to catch up with China’s vast genetic research program, gene editing is fueling an innovation economy that threatens to widen racial and economic inequality. Fundamental questions about science, health, and social justice are at Who gets access to gene editing technologies? As countries loosen regulations around the globe, from the U.S. to Indonesia, can we shape research agendas to promote an ethical and fair society?Eben Kirksey takes us on a groundbreaking journey to meet the key scientists, lobbyists, and entrepreneurs who are bringing cutting-edge genetic engineering tools like CRISPR to your local clinic. He also ventures beyond the scientific echo chamber, talking to disabled scholars, doctors, hackers, chronically-ill patients, and activists who have alternative visions of a genetically modified future for humanity.The Mutant Project empowers us to ask the right questions, uncover the truth, and navigate this brave new world.

Genres: Science, Nonfiction, Biology, Technology, Medicine, Audiobook, Genetics

Paperback

First published November 10, 2020

About the author

EBEN KIRKSEY is an American anthropologist and Member of the Institute for Advanced Study in Princeton, New Jersey. He has been published in Wired, The Atlantic, The Guardian and The Sunday Times. He is sought out as an expert on science in society by the Associated Press, The Wall Street Journal, The New York Times, Democracy Now, Time and the BBC, among other media outlets. He speaks widely at the world’s leading academic institutions including Oxford, Yale, Columbia, UCLA, and the International Summit of Human Genome Editing, plus music festivals, art exhibits, and community events. Professor Kirksey holds a long-term position at Deakin University in Melbourne, Australia.

Reviews

[Barbara · Rating 3 out of 5]

3.5 stars


Author Eben Kirksey

In this book anthropologist Eben Kirksey updates us on cutting edge genetic manipulation that could change the human race.

Modern advances in gene therapy stem from the work of Dr. Jennifer Doudna and Dr. Emmanuelle Charpentier, Nobel prize winners who found a way to edit DNA.


Jennifer Doudna (left) and Emmanuelle Charpentier

In June 2012 the scientists demonstrated that a piece of genetic material called CRISPR-Cas9 can be customized to snip a DNA sequence in a specific place, altering the DNA of a living organism. CRISPR-Cas9 works by unwinding part of the DNA double helix into two single strands. CRISPR then holds everything in place while Cas9 makes two cuts, producing a break in both strands of DNA. New DNA can then be inserted at the cuts.



Manipulating DNA is tricky, and the procedure can have unwanted consequences. For example, when CRISPR breaks a segment of a cell's DNA, the cell's attempts to repair the damage could result in nonsense sequences of nucleotides. Dr. Ashley Fischer, who teaches a gene editing course, observes, "a CRISPR molecule [could] wreak havoc, shredding your DNA into bits and pieces. Many of your genes would be destroyed and your cells would likely die."



Nevertheless, once CRISPR was unveiled, it was impossible to put the genie back in the bottle. Doudna predicted that CRISPR would be used to direct the evolution of our species, writing: "We possess the ability to edit not only the DNA of every living human but also the DNA of future generations."

One aim of genetic manipulation might be to cure diseases like sickle cell anemia and hemophilia, which can be attributed to known genes.



Another aim might be to change things like eye color and hair color, whose genetic basis is also relatively well understood. As scientists learn more and more about the human genome, though, genetic manipulation might be used to make more profound changes.

British scientist Robin Lovell-Badge suggests that people might want to modify genes so their children have perfect pitch; enhanced athletic abilities; resistance to infectious diseases; higher intelligence; etc.


Robin Lovell-Badge

Some military leaders dream of engineering soldiers with enhanced endurance, speed, and muscle mass.


Genetically modified humans for a future super soldier army

Carl June, director of the Parker Institute for Cancer Immunotherapy at Penn Medicine - who has already developed a gene therapy for leukemia - hopes to treat patients with advanced tumors that are not currently curable with known and approved therapies.


Carl June

Molecular biologist George Church - who has long aspired to bring wooly mammoths back from the dead - believes genome engineering can be used to give humans extra-strong bones; to allow people to hold their breath for a long time under water; and to extend life expectancy....maybe even allow humans to achieve immortality. Church also thinks its possible to create resistance to pathogens by preventing the entry of viruses into cells, not only in humans but also in agricultural plants and animals.


George Church

Some people speculate about the feasibility of using gene therapy to change gender; imbue people with fruit smells; increase physical attractiveness; enhance fertility; change racial characteristics; and change skin color.


Genetic engineering might be used to increase physical attractiveness

Others think humans might be altered so they can see in the ultraviolet or infrared spectrum; detect electromagnetic fields; be able to digest plants that aren't currently edible; perform photosynthesis; glow green (for discos); or exhibit other variations.


Genetic engineering might be used to produce green skin that photosynthesizes (or looks good in discos)

Lovell-Badge observes, "The mere fact that we are raising these suggestions does not mean that they should be done."

A potential problem of gene manipulation is that scientists don't completely understand what they're tinkering with. The genes for SOME traits are well understood but researchers have found that many characteristics are controlled by a combination of genes, and traits like mental illness or intelligence - which would be prime targets for gene manipulation - are still a puzzle to scientists. Moreover, 'enhancements' often come with serious health risks, like smaller internal organs or other unwanted side effects.



Another problem related to gene manipulation is access. Gene therapy clinics are financed by venture capitalists looking for profit, so the procedures are very expensive. This means the wealthy - mostly rich white people - have more access than others, a factor that deepens racial and economic disparities. Kirksey notes, "Profit-driven ventures in research and medicine [are] producing a new era of dramatic medical inequality."


Gene therapy is expensive

There's also controversy about using gene therapy to weed out (what many consider) disabilities. Professor Ruha Benjamin notes that "technological innovation and social inequality often go hand in hand." She observes that "some conditions deemed medical problems by doctors are embraced as diversity by differently abled people."


Ruha Benjamin

Biochemist Gregor Wolbring, who uses a wheelchair, would not appreciate being 'cured.' Wolbring "is critical of entrepreneurs and scientists who champion gene therapies as miracle cures or as transformative tools of human enhancement." Wolbring fears gene manipulation will strip humanity of character and biological diversity. Referring to differently abled people, the biochemist says "You can understand people like me as part of human variation, or you can see us as being impaired and eliminate us from the population." Wolbring thinks this would be wrong, especially since differently abled people might have advantages for space travel and other future technologies.


Gregor Wolbring with his students

Thus, when speaking about gene therapy, many questions arise: "Who is gaining access to cutting-edge genetic medicine? Are there creative ways to democratize the field? Should parents be allowed to choose the genetic makeup of their children? How much can we actually change about the human condition by tinkering with DNA?"



Kirksey writes, "As a cultural anthropologist, I have often found myself opposing biologists in debates about human nature. My goal has been to map the broader impacts of genetic engineering for humanity. Using an anthropological lens, I examined new forms of power as scientists, corporate lobbyists, medical doctors, and biotechnology entrepreneurs worked to redesign life itself."


Author Eben Kirksey speaking at a genetic engineering conference

Kirksey describes a variety of experiments in which people manipulated human DNA, many of them aimed at curing HIV-AIDS. One of the best known experiments was performed by Chinese biophysics researcher Jiankui He, who went to graduate school in the United States, then did his experiments in China.


Jiankui He

Having HIV-AIDS makes life especially difficult in China, where people with the virus experience extreme discrimination. For that reason, preventing AIDS would be extremely desirable there. Dr. He hoped to help with the cause (and make a lot of money).

Kirksey explains Dr. He's experiments in detail, but in a nutshell:

Dr. He offered free experimental fertility treatments (in vitro fertilization) to couples with an HIV-positive man and an HIV-negative woman. Several couples consented to participate in Dr. He's research, and agreed that gene therapy could be used on their embryos, to reduce the children's' risk of becoming infected with HIV. Dr. He's goal was to destroy the embryos' CCR5 gene, which facilitates the entrance of HIV viruses into cells. In other words, cells without CCR5 genes are 'immune' to the AIDS virus.


In vitro fertilization clinic

The women in the experiment had their eggs removed and fertilized with their husbands' sperm. Dr. He then injected CRISPR-Cas9 into the eggs right after fertilization. If the genetic surgery was successful - and the CCR5 gene was destroyed - the embryo(s) were implanted in their mother's womb.


CRISPR is injected into fertilized egg

In October 2018 this experiment resulted in the birth of two CRISPR babies, Lulu and Nana.


CRISPR babies Lulu and Nana

Kirksey notes, "Dr. He's story is a gateway into a much bigger enterprise: the tale of CRISPR and the emergence of genetic medicine." Experiments along this line were already well under way in England, the United States and China - the aim being to develop medical applications of genetic surgery for adults. Kirksey goes on to say, "Gene therapy research is proceeding apace, and society will have to deal with the practicality, morality, and consequences of proceeding with this kind of medicine."


Genetic research has been proceeding apace

The author traveled to a number of laboratories, clinics, and conferences to research the book, and interviewed scientists, doctors, professors, sociologists, artists, disabled scholars, chronically ill patients, hackers, and others - who have a diversity of opinions about humanity and genetic engineering. Kirksey also visited Xinhua County, where Jiankui He grew up, and provides a mini-biography of the scientist.


A village in Xinhua County

Kirksey has a casual travelogue-type approach to his writing, and intersperses the genetic engineering parts of his story with snippets about his travels; hotels; accommodations; meals; conversations; and so on. I liked the journal-like style of the narrative, which added interest to the book (for me). For instance, Kirksey mentions that the lobby of Hong Kong's Le Méridien Cyberport Hotel has artwork depicting "a gorilla peeking out of an orange, smoking a cigarette";


Le Méridien Cyberport Hotel, Hong Kong

That he dined on "Korean BBQ followed by papaya and snow fungus cold soup" and ate "roast chicken, sour vegetable soup, dumplings, sautéed tofu, and sesame seed cakes";


Papaya and snow fungus cold soup

That Jay Johnson - who volunteered to become one of the world's first gene edited people in 2009 - is African American, has striking green eyes, wears a salt-and-pepper mustache, and has a subtle hoop ring in his right ear; and so forth.


Jay Johnson

Kirksey also likes to compare real world science with science fiction, and mentions Frankenstein, Blade Runner, Neuromancer, Gattaca, Wolverine, Altered Carbon, Star Wars, Terminator, Brave New World, and more. For instance, the Netflix show Stranger Things describes secret government experiments on children with unusual powers; and the X-Men movies feature beings with uncanny superpowers, who face severe persecution. Before long, the real world may begin to resemble science fiction.





On the downside, the story is a little all over the place, straying into areas that are only tangentially related to genetic engineering. Still, the book is interesting and informative, and well worth reading.

Thanks to Netgalley, the author (Eben Kirksey), and the publisher (St. Martin's Press) for a copy of the book.

You can follow my reviews at https://reviewsbybarbsaffer.blogspot....

[Jenna ❤ ❀ ❤ · Rating 4 out of 5]

Since at least the time of Mary Shelley and her Frankenstein story, humans have wondered what it would be like if we could "play God" and create life in the lab. Can we put ingredients in a petri dish, apply electricity, and bring it to life?  Can we breed different types of animals? Can we bring back to life long-extinct lifeforms? And perhaps paramount to all else -- 

Can we not just create human life but also improve on "God's" work and create superior human beings?



The first time I heard about CRISPR-Cas9 genome editing technology and how we can use it to edit DNA, I was amazed. How thrilling!  I began imagining all the diseases we could cure by just going in and tweaking someone's DNA.... cancer, genetic diseases, HIV, heck even the common cold.  And not only that but we could change an embryo's DNA to prevent genetic diseases from ever occurring in the first place. 

As with all technology though, gene editing can be used in commendable ways... or nefarious. 

The Mutant Project: Inside the Global Race to Genetically Modify Humans tells the story of several doctors and scientists who are on the forefront of CRISPR technology. The technology was discovered by two women Jennifer Doudna and Emmanuelle Charpentier (the molecule itself, found in bacteria, was discovered by Francisco Mojica but Doudna and Charpentier figured out how it works).

The book mainly focuses on Jiankui He who made the world's first genome-edited babies (Lulu and Nana) in 2018. Dr. He used CRISPR technology to snip out the CCR5 genes in the embryos, making them immune to HIV.  

It was extremely interesting to read about how all of this works. I got a much broader understanding of the technology, and learned about other gene-editing technologies as well, such as zinc fingers and CAR T cell therapy.

The Mutant Project is also a cautionary tale. Eben Kirksey delves into the ethics around editing genomes and how companies, driven by dollar signs, are forging ahead even when it's not at all clear what the consequences might be.

Mr. Eben points out how genome-editing technology might be used to create superior humans for the wealthy only, furthering inequality (it is so prohibitively expensive that only the wealthiest Americans can afford even the experimental trials). He also points out how the technology is driven by profit much more than by a desire to help humanity, meaning the price isn't likely to lower by much. For instance, the first gene therapy to be approved in the United States, a cancer treatment, has a price tag of $475,000.

While at times I found the personal details of the scientists and doctors to be tedious, for the most part I was fascinated by what I read.  I recommend this book to anyone interested in learning more about gene-editing technology, how it works and the current ethical thinking around it. Unfortunately, at least in the United States, there is little federal oversight of gene-editing. Anyone can purchase a CRISPR molecule online for a very low price and start their own experiments. I don't know about you, but that frightens me. 

Though a lot of good can be done with gene-editing technology, there's also a lot we just don't know - and a lot of ways this could go wrong. Unfortunately, we aren't yet at a place where we can alter the DNA of every human on earth to protect us from Covid-19 so let me use this space to add a friendly reminder from me and Frankenstein:



It's not difficult and it can save lives!

[Emma · Rating 4 out of 5]

Rarely have I read a book that so clearly reveals one of the ways in which the future of humanity is going to be wrecked by our own worst characteristics.

Even before I picked this up, I'd already heard of the drama caused by Dr. Jiankui He and his experiments with CRISPR. I remember listening to BBC Inside Science report the scientific community's reactions to the 2018 conference, responding to the birth of two genetically altered twins like it was a bolt from the blue. What this book demonstrates is that there was a hell of a lot more going on. Dr. He might have crossed the line, but there were many individuals and labs who had their toes pressed up against it.

What I didn't know was the extent to which this kind of research and experimentation is ruled by big business. Eben Kirksey shows time and time again that greed lies at the heart of so many decisions about what to and what not to do. For all the 'I'm trying to help people' rhetoric that makes this sound like a crusade for the sick or infertile, it's all about money. And that's the case on every level.

There is hope here, but it's mainly from those socially or medically disadvantaged people who need this scientific and tech future to work for them. I'm not convinced that's going to be the case. Companies already put specific diseases or conditions on the back burner if they're not going to be profitable enough. Governments defund or simply refuse to try interventions that cost too much money. It seems to me that gene editing is going to add a whole new dimension to that kind of social and medical inequality. As Ruha Benjamin argues: 'The way we frame research is never neutral, universal, or inevitable. The uses of gene editing techniques are seeded with values that are economic as well as social'. There's a very real possibility that CRISPR could allow the very rich and already advantaged the means to improve not only their chances of having a child, but also the choice of 'type' (from sex to skin tone), and even giving them an added boost (such as resistance to disease). Meanwhile those who can't access even basic healthcare carry on with their worker bee children of the future. The dystopia we've all been waiting for is right here.

Saying that, it's not entirely clear what the repercussions of this new method will be. Gene editing makes CRISPR sound sharp and surgical when it's more like an explosion followed by wait and see... The twin girls 'edited' for HIV resistance had a shaky start and nobody really knows what's going to happen to them in the future. That Dr. He had little understanding, and even less care, is one of the reasons he received so much approbation for his experiment. But I doubt his prison sentence is enough to put off others on the same path. This is a multi billion dollar business after all.

If you want to know more, this is a great place to start. Kirksey writes with the kind of verve and sense of pace that some thrillers fail to match. He comes at the conversation from unexpected avenues and the book is all the more insightful because of it. All in all, an engrossing read.

And we'll have to catch the news for what comes next....


ARC via Netgalley

[David Rubenstein · Rating 4 out of 5]

This book is about scientists and doctors who are genetically engineering humans. They are using CRISPR and other technologies to alter the DNA structure of embryos.

The book focuses on Chinese scientist Dr. Jiankui He, who genetically altered two twin embryos. The purpose of the alteration was to remove the possibility of contracting AIDS. He was encouraged by officials at his university and by governmental officials to pursue his research. It seems, though, that he tricked doctors into performing IVF treatments using modified embryos. However, a year after he announced his research at a conference, he was arrested in China for illegal medical practice, and committed to three years in jail.

There are still big technical problems that are very concerning with genetic modifications. There is always a possibility for off-target effects, like scrambling DNA in unintended locations. Also, gene therapy to perform personalized medicine is presently very labor intensive and costly. And, it only works in one person.

A big part of the book is the stress on social privilege. There is fear that only the elite will be able to afford enhancement technologies, and therefore use them to become more elite. Also, even in these very early stages of research, experimental treatments can incur high costs for transportation and hotels. This prevents low-income people from participating in the research. In the research experiments performed by Jiankui He, these costs were subsidized by the company that sponsored the study.

Genetic tests are being done in the US for many genetic conditions; the selection for gender is already legal. However, the medical risks of IVF do not outweigh the potential benefits of genetic enhancements. Instead of genetic editing, it would seem to be preferable to use genetic selection to filter out known serious genetic defects.

The author seems to go into diatribes against social inequality. Much of this has to do with the unequal availability of genetic treatments to low-income people. But this inequality is already affecting society in a big way--for example, IVF procedures are extremely expensive. We don't have to dig into genetic enhancements to find inequalities. At this point in time, the major issue seems to be the possibility that mistakes can cancel out any perceived improvements in an embryo's DNA. The author does describe how most genetic conditions are the product of multiple genetic defects. I would have liked to have read more about quantifying the likelihood that attempts at genetic enhancements will go awry, in unforeseen ways.

[Alyssa ❀ · Rating 4 out of 5]

I rated this ⭐3.5/5⭐

I learned a lot from this book and it deepened my understanding and knowledge, about things I only briefly understood prior to reading.

Looking into all of the different perspectives and situations in regards to gene editing and their pros and cons, was quite eye-opening to say the least. I didn't know the full extent of the story about Jiankui He, and unfairly considered him a "mad scientist" in the rush to modify humans. Getting a different perspective and sourced information was truly enlightening and informative.

CRISPR/Cas9 (and related gene editing tools) are giant leaps in science and the future, but they raise many ethical questions. A lot is discussed and covered in this book, which helped me form an opinion and understand further. The author does an incredible job of staying neutral and just delivering the facts, which is ideal in my reading. There is no true clear answer to this being right or wrong, but we get to read a lot of personal stories and gain insight into why some fear it and others favor it.

I will say that some things were not necessary filler, to a book of this subject, like the details about what people had for lunch. Also the author sharing personal information about his fertility results for the purpose of science and understanding, was quite admirable, but I found it highly unnecessary to include the details of the pornographic content they offered in the clinic. It was out of place and off-putting to me.

That said, I did enjoy this and I have a new take on the subject matter, which is always nice to take away from a book. The author broadened my understanding, my empathy for those that find gene editing necessary and also furthered my hesitance to accept it as the future.

✨Thank you to the author, St. Martin's Press and NetGalley for an ARC of this title. I received a free review copy of this book, in exchange for an honest review.✨

[Rama Rao · Rating 5 out of 5]

Reflections on recent advances in gene surgery to create modified human babies

This is a nicely written book which focuses on current biomedical advances that allows medical professionals to tinker with Mother Nature. Applications of gene editing has tremendous potential in the pharmaceutical industry largely driven by economic interest. Academics are persuaded to get involved for the name, fame, and fortunes that rollout from this venture. But activists, sociologists, and ethicists are pushing back. The author narrates the discussions he had with leading figures in this growing field and offers insight into scientific developments in human gene editing and associated ethical issues. There are profound questions about how people may choose to alter their own DNA. If everyone uses these tools and achieve unimaginative dreams, to grow big muscles or have blonde hair with blue eyes and great figure, the humanity will be stripped of character and biological diversity.

In November 2018, when a Chinese scientist named, Jiankui He created the first human genetically edited twin girls. He used their parents' sperm and eggs, and to protect the children from the HIV, since the father is HIV-positive, he used the CRISPR technique to edit the genes, and after fertilization created the HIV-free embryos. It was as initially praised as a major scientific advancement. But following scrutiny on how the experiment was executed, He received widespread condemnation and three-year jail term.

The author narrates his discussions with leading figures in this field that includes; Nobel Laureate Jennifer Doudna (2020 Nobel Prize in Chemistry for the discovery CRISPR genome editing), Biochemist Gregor Wolbring, Biologist Jiankui He, physicist Michael Deem, Feminist Studies Professor Donna Haraway of UCSC, Harvard geneticist George Church, Historian Ben Hurlbut, HIV researcher Jay Lalezari, HIV-patient advocate Jay Johnson, artist Tamara Pertamina, and several members of transgender community and HIV activists. The book reads flawlessly and offers an insight into what is happening in the emerging world of human gene surgery.

[Sara · Rating 3 out of 5]

The Mutant Project raises some interesting points and perspectives on genetic modification.

It is at its best when it delves into the different perspectives of people who are either pro or anti genetic modification. Turns out there are quite a few colorful characters that want to edit genes for frivolous reasons. There's also some unique perspectives from the disability community and their thoughts on the 'worthiness' of life.

The major focus of the book, however, is on He's experiment to genetically modify embryos in order make the resulting children resistant to HIV. Some parts of the narrative I liked: such as how He and his team skirted the rules to allow the gene editing to occur even though they were supported financially by many in the scientific community and government. He also does a thoughtful analysis of He's history, what drove him to edit the embryos, and his character in general. It is a complicated story.

However, the fact that more than half the book focuses on this one case is not immediately apparent by its title. The first half explores different entrepreneurs or activists, while the latter half is strictly on He's case. This makes the book a bit uneven. I feel like he either should have titled the book based on He's experiment and stuck to the one topic of genetic engineering in China or followed the thread of the first half with different character studies.

The author doesn't inject himself too often into taking an actual position on genetic engineering. He had a small section in the book where he described CRISPR Cas-9, but I think that section could have been expanded. I didn't know how inexact the science still is (some diagrams or images might have helped too). I get that the book is a bit more journalism than strictly science, but I probably would have enjoyed more of a scientific exploration at least in the beginning.

I'm generally pretty pro-science when it comes to the promise of genetic engineering, but I think the book succeeded in getting me to think of the pitfalls and broken promises in the process. My thought is that better books on the topic might exist, but the story of the He and the edited embryos is an interesting one by itself and worth the price of admission so to speak. Let's hope those twins grow up healthy!

[Beas Chattaraj · Rating 5 out of 5]

We are all aware of mutants. And they exist not just in pop culture or scifi novels but also in the real world. And they aren't as glamorous as the superheroes from comic books but they exist all the same.
A few decades ago science gave us the first testtube baby during a time when the idea was unconceivable (excuse my pun). Today IVF and fertility clinics exist all around the world. In 2012, scientists learned how to modify DNA with CRISPR and in 2018 the world's first genetically 'edited' babies were born. This revolutionary experiment to modify the genetic code of humans so that they are born HIV resistant, took place in China. But other trials and experiments have been taking place in USA before that.
Eben Kirkskey takes us on a journey on how the revolution came to be. From the labs of Shenzhen to the lobbies of Washington DC to the streets of Yogyakarta, this book is about the trials and tribulations of the activists, the participants, the scientists, the dreamers and the cynics. There is a moral question as to where gene editing is the right way to solve problems. And of course there is no right or wrong answer to this question. The process is unpredictable and hence dangerous. It is aslo expensive and hence inaccessible for the marginalized population. Then comes the question of the right use of this technology. In the wrong hands it will be possible to edit out unwanted characteristics in a human, and there will come a time when there won't be any place for people of colour or differently abled people because everything can be changed or 'enhanced'. Do we truly want that? One the other hand this can be the solution to critical diseases. Either way, this is still a topic of debate for the scientific community.
This book will make you think. And it will help you learn so much. At times it did feel a bit long, but I loved how it read more like a work of fiction. Highly recommended!
4.8 stars. Thank you Netgalley and St. Martin's Press for the e-ARC.

[Steve · Rating 4 out of 5]

“The Mutant Project” is a thought-provoking and insightful book that delves into the controversial topic of genetic modification in humans. Written by Eben Kirksey, an anthropologist known for his humanistic views on science and technology, the book takes readers on a journey to the frontiers of genetics, medicine, and technology.

At the heart of the book is the story of Dr. He Jiankui, the Chinese scientist who shocked the world in 2018 when he announced that he had created the first genetically modified babies. Kirksey’s narrative follows Dr. He’s rise from poverty to prominence, and his eventual downfall as he is sentenced to prison for “illegal medical practice.”

But “The Mutant Project” is much more than just a biography of Dr. He. Kirksey uses this story as a springboard to explore the wider implications of gene editing technology. He raises important questions about who gets access to these technologies and how they will be used to shape the future of humanity.

One of the strengths of “The Mutant Project” is Kirksey’s ability to present complex scientific concepts in an accessible and engaging manner. He explains how CRISPR technology works and its potential applications in medicine and beyond. But he also delves into the ethical concerns surrounding gene editing, such as the potential for widening racial and economic inequality.

Kirksey also ventures beyond the scientific community to talk to disabled scholars, doctors, hackers, chronically-ill patients, and activists who have alternative visions for the future of genetic modification. These diverse perspectives add depth and nuance to the book, and challenge readers to think critically about the role of science in society.

As for the audiobook version of “The Mutant Project,” the narrator, Jonathan Todd Ross, although clear and easy to understand comes across as a little wooden.

Overall, “The Mutant Project” is a well-researched and thought-provoking book that tackles complex issues with clarity and nuance. Whether you are a scientist, a policy-maker, or simply someone interested in the future of humanity, this book is well worth your time.

[Chantal Kloth · Rating 5 out of 5]

debated between a 4 and 5 star, but the ending i think swung my rating. i really enjoyed the deep dive the author takes into the topic

[Ron · Rating 4 out of 5]

This book covers the case of Dr. He in China who used genetic editing to alter the gene for HIV cell receptors. This would make a baby immune to HIV and two live births Nana and Lulu were achieved. However, He was found to cross the line in safety protocols and went to jail. This book does a good job of telling the whole story and is worth reading.

[Kathleen Gray · Rating 5 out of 5]

This is one to pick up if you are interested in the emerging issue of gene modification. Kirksey has done his best to bring technical details down to earth for non-scientists, in part by focusing on the people who have been working in the field. Jianki He, a Chinese scientist, set off global concerns in 2018 when he not only used CRISPR to alter the DNA of human embryos and then told the world about it. This touches on some of the ethical issues but, to be fair, it's not meant to full discussion of that aspect of the research. Kirksey wraps his own medical issues into the book which sort of works. Thanks to Netgalley for the ARC. Intriguing and informative.

[Maxwell · Rating 4 out of 5]

Interesting insight into the world of genetic modification and what it could mean for future cures. Also has some interesting notes into the inequality this could cause coupled with the chances for this to cause further racial tensions in society.

[Hmmclean · Rating 4 out of 5]

This is a fascinating deep dive into the world of CRISPR genetics, designer babies and the ethical questions surrounding them. I really enjoyed the science, stories and the focus on potential social effects of gene editing. The books straightforward approach allows the reader to engage with the stories while becoming more informed on the world of biotech.

[Raed · Rating 3 out of 5]

"Now, we have the opportunity to be more audacious with our imagination. It is time to make new personal and political choices about the future of human biology..." , this is how the book ended , i think this ending deserve another book to discuss the real problem of humans with a modified DNA

[Patrick Pilz · Rating 4 out of 5]

Gene editing on humans is certainly a controversial topic; Eben Kirksey makes a pretty sold case on the opportunities and pitfalls of CRISPR/CAS9 applications based on current examples of which some crossed some current ethical boundaries. Over the course of the book, the stories illustrate the great service these technologies can provide to human health, but also the risks involved. It becomes clear that gene editing is perhaps not as reliable of a technology one may thing, and errors in modifying crops have probably vastly less consequences than errors in mammals or even human beings.

Mutations in our genome happen all the time, but what ethics shall lead us to decide where we leave mutation to random natural events or targets artificial treatments. The book asks the question, but does not really postulate a stance on this balance. While I find the stories throughout the book truly engrossing, I was a little disappointed with the ending. Still, 4 Stars for me.

[Grazyna Nawrocka · Rating 5 out of 5]

What is this book about? It shows a broad spectrum of genetic engineering applications. Would you like to have naturally fluorescent skin? Now it is possible. CRISPR - Clustered Interspaced Short Palindromic Repeats is a hero (or villain?) of this story, because it allows to "generate mutants." Who cares for this technology? Biohackers, transgender and intersex activists, filmmakers, pharmaceutical and investment companies, artists, military, etc.

The author focused on environment, which allowed to create two girls with modified DNA. Lulu and Nana were supposed to become resistant to HIV, as a result of this project. Eben Kirksey tells us about the background of dr. He Jiankui, who "engineered" the girls, China's politics regarding the issue as well as treatment of LGBT community there. Scientific atmosphere of Shenzhen is described in detail and suddenly we realize: China is not a third world country. The Chinese government announced plan to sequence DNA of every human on the planet.

CRISPR molecule can be obtained via internet for $99, and some artists have taken advantage of the fact. The book also contains in depth look at the genetic research to cure the AIDS. Although there are fantastic options, they are very expensive - around $5000,000.00, so there are self-administration and "do it yourself" kits. Imagine that!

Ethical problems with genetic engineering are many. For example, some people with disability claim that human diversity is a good thing, supports balance and tolerance and does not need to be remedied. On the other hand, in England genetic modification is applied to embryos with primordial dwarfism, cystic fibrosis, intellectual disability, even irritated bowel syndrome. There are other moral issues arising from the subject of experimenting on humans. The way I see it, the taboo has been broken. There are thresholds we are afraid to cross, because we don't know what is going to happen, but that's the only way to find out. This said, what right do you have to experiment on babies who never expressed their consent? It reminds me of head transplant done in Russia. It's so interesting, but how would you like to be a "lab rat" under observation for the rest of your life?

I was told that using hand sanitizers and microfibers affects our DNA, so does radiation, and chemical toxins. We know very little about the direction in which evolution is going.

The book tells a fantastic story in masterful way. It is good to be informed about what scientists do when we don't pay attention.

[Book Him Danno · Rating 5 out of 5]

The Mutant Project bring readers into the real work of genetic research and the questions that need to be asked before we try and even more detail gene editing in the world. What would a perfect human be? Well it before everyone who only the wealthy nations to choose who is deserving of the research and science.

As a teen many of have read the book Brave New World and if that book taught us anything at all is that no matter the "protection of information" it will never be as peaceful or perfect as people will hope for.

The author looks at all sides of the debate the pros and cons as well as the many different political, financial, religious aspects of gene editing.

The author is able to bring readers to find their own decision though the research that has been done.
This book is for science nerds to stay at home moms because some day this will effect everyone.

Thank you to Netgalley and the publisher for the advance copy of Eben Kirksey The Mutant Project

[Todd Evilsizor · Rating 4 out of 5]

Thanks to the publisher for the giveaway copy.
Having a scientific background, I found this book interesting, insightful and educational. Genetic manipulation is simultaneously scary and hopeful for disease prevention. At this point in time, the technology doesn't seem to be ready for widespread use. This book covered, in a roundabout way, the pros and cons of these developments. As in most all technically focused books, the writing was choppy and inconsistent - often straying far away from the topic. I'm not sure that the detailed descriptions of the surroundings and what people were wearing was needed. The book could have been 2/3 the length without the extraneous details. All-in-all a good book, just a bit too much fluff for my taste.

[Vivien · Rating 5 out of 5]

The book by Eben Kirksey is fabulous. It's thoughtful and deeply researched, it's brave and forthright.

As a journalist who covers biomedicine, also gene-editing, I see how much this book gives to anyone interested in learning more about this area and making their own decisions about what has happened and what might happen in the future. It's deep, uniquely, effortlessly informative.

A scientist and his team went rogue and created gene-edited babies. That event created waves and it's important to understand what he did and why. And it's important to build ways to think long and hard about the bigger context: how is medicine, how are society and the nature of personhood changing due to new genetic technology and what shifts are happening. The book draws you in to think about the big and the minute without feeling like you are plunked into an academic seminar and you want nothing more than to scurry to the exit sign without anyone seeing.

Kirksey's "anthropologic lens," as he calls it, is one that can focus in and then draw the aperture wide and then close in again. He looks and describes without forcing a view or opinion on you. It's a travel book, in a way, he travels to see people and describes where is is and why he's there. And then talks about the person he is visiting and how they fit into the bigger arc of what he is describing. Each visit, each escapade and the book has some of those, too, compelled me to keep reading.

It's not good guys vs. bad guys--he does not force a reader into one camp or another. He describes what he sees and experiences and takes in everything about these encounters. The reader can make his/her/their own decisions. Some situations might leave you gaping in incredulity. Others horrify. Others might make you smile or cry.

In the book are people of all stripes including scientists and ethicists. But it never feels teach-y instead, I felt I kept learning a lot. And it never feels preachy. There are people who are ill or disabled, there are many characters who have been in the news and plenty who have not seen any kind of spotlight.

He deftly weaves the layers--science, culture, politics, history, gender, sexuality. There's human frailty; ambition--sometimes, the blind kind; ego and contradictions galore among those he writes about. It's about, as he phrases it, a race ongoing to genetically modify people. And it involves more than one 'rogue' scientist. The book takes you to thinking what it means to be human.

He fearlessly puts himself in situations to try to uncover not just what happened in the lab of Jiankui He, the lab responsible for editing the genomes of humans before birth but also how it might feel to himself be a patient in today's modern reproductive medicine. He finds out about He's life, his upbringing, where he grew up. He looks at approaches to science--especially cutting edge technology--in China and around the world. He looks at HIV and other illnesses, the desire to conceive one's own child, about activists and hacktivists.

Surprises crop up at every turn, reminding me gently to not jump to conclusions or judgments just when I felt I had fastened down some views like a tent peg. Nope, had to lift up that peg and just keep reading.

[Jay Le · Rating 5 out of 5]

Rating: 5
Re-Read Factor: Yes

"CRISPR has no power. This molecule only becomes powerful in the hands of individual people."

The Mutant Project: Inside the Global Race to Genetically Modify Humans was a surprisingly fluid read. Eben Kirksey takes a famous, intricate, ethically-controversial topic and examines it through scientific, anthropological, and modern lenses. He highlights how science can be obstructed with controversy and that nothing in the field, now merging into that of eugenics, is as black-and-white as it seems.

The book also provides insight into the financial/business aspects of genetic modification, in which private companies essentially market their services with "repeat customers" in mind. For example, the book highlights how men with lower fertility rate who depend on IVF can precipitate their future children/grandchildren/etc. to have fertility problems as well, thus forcing them to return to clinics for fertility treatment.

I must say that there were some elements of the book I found very concerning and is by no means a detraction from the book itself. Adam Zaretsky's dream of bioengineering genetically-modified children for the sake of art was appalling and did remind me that such people exist on the border of sanity and insanity.

Overall, Kirksey details the science in an easily understandable way, engaging readers across all audiences, not just the science/medical community. The future is today, and this book is a great introduction into the world of gene editing. I would recommend this book to everyone interested in expanding their worldviews or collection of knowledge at large.

[Jessica Higgins · Rating 4 out of 5]

Interesting history on gene mutation and what the path forward looks like for the future.

In November 2018, Dr. He Jiankui shocked the world when he announced the first genetically edited babies, twins to be exact. He further shocked everyone when he announced there was another pregnancy. With great power comes great responsibility and the discussion has shifted from when will it happen to how do we oversee the morality of this ability. China has long dominated genetic research by recruiting top talent to the country to make breakthroughs before other countries. But when it becomes available wide stream, who will decide who gets access? These are just some of the questions that plague the future of this field.

Eben Kirksey takes readers on a bumpy ride as he kicks off his book with the unveiling of the genetically modified twins, Lulu and Nana. However, this probably did not occur the way that readers think. It was planned to be documented in a research journal, but another researcher got wind of it and leaked it out, which caused prerecorded YouTube videos to be released to the public, therefore causing all kids of chaos at this genetic convention. It’s a mess to be sure.

I really enjoyed the history portion of this book and how we got to where we are today. Kirksey did a great job explaining why China is further along in this field than the United States. I also enjoyed getting to understand the background story of clustered regularly interspaced short palindromic repeats, commonly known as CRISPR, which is the backbone of this book. Much of the book focuses on finding a cure for HIV through genetic modification, which is where much of the current research is focused. It is a higher-level book, so just reading for enjoyment likely won’t be what keeps readers engrossed.

[Elle · Rating 4 out of 5]

Eben Kirksey explores advances in and questions the principles which inform our interaction with genetic engineering in The Mutant Project. This book zeroes in on one of the most recently discovered genetic engineering technologies, CRISPR, which garnered a great deal of attention after it was revealed that twins had resulted from a pair of embryos that had been genetically modified using this technology. Kirksey provides context by surveying the history of genetic engineering and ditches scientific jargon to provide clear descriptions of the technology used without oversimplification. We are introduced to real people, with very palpable needs, desires and intentions - some good and others somewhat questionable. Kirksey explores the history of DNA and genetic engineering research in detail in this book and the way in which people have interacted with these advancements over the years. Biotechnology companies facilitate ground-breaking research and develop life-changing, and often life-saving, gene therapies but often sell them at such exorbitant prices that these treatments remain inaccessible for the majority of people who stand to benefit from them. Grinders believe that gene engineering tools should be available to the public and engage in (sometimes risky) genetic modification of their bodies within their community. Researchers are constantly encouraged to push the envelope while the lives of several in dire need of novel or existing gene therapies hang in the balance. Kirksey interrogates our relationship with genetic engineering, discussing limits, capabilities and accessibility of current and future technology. This account is thought-provoking, extremely informative and overall a well written book.

[Susan · Rating 5 out of 5]

An astonishing book about doing gene modification on human embryos. It’s not just for diseases any more. When the author went to a conference, she found out that a Dr. He from China had produced two healthy baby girls with the ability to resist the HIV virus. Dr. He first lost his job at an university, then a China district court put him into prison for his genetic babies that he was responsible for. The doctor has announced his work by using YouTube videos. Dr. He did not want to announce this at the conference until a journal published his work. It wasn’t like scientists world-wide hadn’t been experimenting but not on humans. At this time, it isn’t done though in the near future it may. If so, it will be for the rich as it is very expensive to do. I don’t think I want some of this gene surgery done as the implications are more than I could decide what is right or wrong to do in regard to gene surgery. Would there be superior humans vs. normal humans? How would that effect the life of humans?

Remember the tv show “X-files”? Reading this nonfiction book, “I want to believe” that they would wisely use a set of ethics that all would follow, but would they? Humans are very competitive when bribed or should I say encourage by their country’s government. It is a fascinating look at a science I don’t think about as a rule. I think reading this book has changed that for me. The author has written an engaging book. It’s written to show us what the future could hold for us or will?

Disclaimer: I received an arc of this book from the author/publisher from Netgalley. I wasn’t obligated to write a favorable review or any review at all. The opinions expressed are strictly my own.

[Diane Hernandez · Rating 4 out of 5]

With the first genetically modified babies born in October 2018 in China, The Mutant Project has officially begun. Of course, the doctor involved was ultimately sentenced to a three-year prison term. But once the genie is out of his bottle, it’s impossible to coax him back in.

It turns out that CRISPR, the tool used for gene editing, is less like Microsoft’s cut and paste and “more like a tiny Reaper drone that can produce targeted damage to DNA.” It can “produce serious collateral damage, like a drone attack that accidentally takes out a wedding party instead of the intended target.“

The book spends a lot of time (42%!) explaining how the AIDS crisis has produced a bunch of genetic hackers trying to use loops of DNA to fight AIDS. Injecting yourself with untested “cures” reminds me of citizen science during the Renaissance. It is both exciting and scary in equal measures.

Much of the history depicted here is also shown in the Netflix limited series, Unnatural Selection, in edited form. So if you were intrigued by the show, you can get more details here. Or you, like me, can watch the show after reading the book to see what everyone looks like.

If you like real science written in an easily understandable way, read The Mutant Project. It does a great job explaining how gene manipulation may soon cure genetic diseases. CRISPR, more disturbingly, can also allow rich parents to pick their child’s physical traits and health risks, well before birth. It really is a Brave New World. 4 stars!

Thanks to St. Martin’s Press and NetGalley for a copy in exchange for my honest review.

[Mariel]

Great synthesis of contemporary debates in gene editing. There are some really big questions about the ethics of mutation or eliminating mutations, especially around transmittable diseases or neurodivergence. Soon, parents will likely be able to screen for not only gender and a handful of diseases in an embryo - they might be able to choose certain features. On the one hand, editing embryonic genes expands the pool of who might be able to have children (the book talks about HIV+ parents who have biological kids without passing the disease to their partner or child). On the other, access to gene editing will be cost prohibitive, so we could be endorsing a class difference where the wealthy are genetically modified to an idealized level for the parents, and some "less desirable" qualities that can be eliminated through expensive gene editing will still exist in lower classes. The natural next step in this debate is about who gets to decide what a "less desirable" quality is and how that reflects on people who have these qualities. This will create social status's and affiliations perhaps more potent than the othering we see today.

Broadly, I think gene editing will be the ethical issue of my generation (sorry, climate change). This book will likely be outdated in a few years so it was great to read now.

[Noémie Merleau-Ponty · Rating 5 out of 5]

I read The Mutant Project with the thirst coming from enjoying a good novel, the curiosity of a private investigator, the angst and commitment of an advocate for more inclusivity, creativity and steam punk approaches to biotechs. The writing style is also a fantastic example of the power of ethnography. It is lively, self-explanatory, and leaves room for many voices to be heard or suggested, the one from Eben Kirksey being both very personal and very professional. I learnt a lot, while closing the book with a sense of renewed commitment for feminist practices in a competitive, profit driven, individualistic biomedical realm.

Of course, and this makes the book even stronger, I was not always in complete agreement with the openly judgmental style in some passages, though I could understand why Eben Kirksey chose to write this way. Again, this is not a harsh critique, because it is impossible to have a definitive opinion regarding the utterly complex intermeshed aspects of this technology in the making.

I also deeply appreciate that I actually can recommend this book to non-academic friends, who will, I am sure, find many tools to build their own views. This is a must read, because this biotechnology concerns us all.

[Clogs · Rating 3 out of 5]

this was a good follow up to the previous book on genetic engineering (the name is escaping me now). that was more policy and in a very fast moving field a little outdated. This one was right up to date.

It delved into some very interesting areas I hadn't thought of before and exposed some aspects of the engineering that were interesting. Like, biohackers doing DIY gene editing. Or at least trying too. The science says what they are trying will never work but they try anyway.

Or the artists, manipulating (and releasing into the wild!) engineered animals. Or the other artists walking around with sperm bank/CRISPR stations in a food cart. Of course, CRISPR's going to happen in a food cart!

As well as (obviously) talking about the obvious moral issues. Discrimination in a whole other avenue - are you pure human or edited/ehanced? And which is better? especially as the rich people (AGAIN!) are the enhanced ones. This also introduced the very interesting ideas of post racial and post gender worlds. If you can change/choose those things do we still have them in the same way and do they still matter?

Especially with a very imperfect science of CRISPR and executing off-target mutations.

[Danielle C. · Rating 5 out of 5]

Great narrative exploration of CRISPR, a novel gene-editing tool and how it and other tools like it, are changing the genetic landscape for humans. The skeleton of this work is an experiment carried out by the Chinese Dr. He which produced the first humans born with edited DNA, using CRISPR. Later Dr. He was discredited and imprisoned for illegal experimentation on humans due to ethical concerns. The writer breaks down all the medical technology we have at our disposal now for testing and changing our DNA, and what led to this momentous event. Especially focused on ethical and inequality concerns, the author talks to a wide range of experts and "experts" in the field to discuss what is possible and what should be done or not done to our DNA both before and after birth. Written as expository narrated journalism, its a gripping read with a story to tell and an exciting cast of characters. International politics, the Silicon Valley "work fast, break things" mentality, socio-economics, and early AIDS activism all have a place here and make for a dynamic and wide ranging exploration beyond just the science of gene-editing.

[BookCrazy · Rating 4 out of 5]

To kick off 2021, I'm reviewing one of the few nonfiction books I read every year.

This was nothing like what I expected. I thought the book would discuss in depth the moral issues of genetic engineering and it does so but in a very peculiar way.

We travel through the eyes of the narrator to scientific conferences... and what is said behind stage, into the lives of volunteers of past clinical trials and their struggles.

CRISPR is a relatable new technology but the issues it brings are old. Who has access to these new developments? Is this just going to further separate rich from poor? Who decides the limit? Scientists? Politicians? Everyone?

To somewhat answer those questions, we revisit the past to understand what happened during the HIV/AIDS epidemic in the 80's.

Genetic engineering is something we should concern ourselves because the future is going to be shaped by the choices we make now as a society.