CRISPR People: The Science and Ethics of Editing Humans

by Henry T. Greely

What does the birth of babies whose embryos had gone through genome editing mean--for science and for all of us?

In November 2018, the world was shocked to learn that two babies had been born in China with DNA edited while they were embryos--as dramatic a development in genetics as the cloning of Dolly the sheep was in 1996. In this book, Hank Greely, a leading authority on law and genetics, tells the fascinating story of this human experiment and its consequences. Greely explains what Chinese scientist He Jiankui did, how he did it, and how the public and other scientists learned about and reacted to this unprecedented genetic intervention.

Genres: Science, Nonfiction, Biology, Philosophy, Medicine, Technology, Politics

400 pages, Hardcover

First published February 16, 2021

Reviews

[Marks54 · Rating 4 out of 5]

Someone wiser than me once suggested that rather than read books individually, it would be better to form one’s queue with related books, to the extent possible - books that share a common subject matter to some degree or overlap in topical focus, or treat similar subjects with different perspectives. That is sometimes difficult to arrange in real time although in recent years, especially during the pandemic, there have been more opportunities. There have been lots of plague and pandemic books to read. There have also been a large number of books about weird and disruptive populist politics on both sides of the Atlantic. There have been others as well on more specific topics.

A really good pair of books popped up recently that should be read together if possible. I wish I had discovered them, but I owe a debt to the Economist a couple of issues back for reviewing them together. The book reviewed here - CRISPR People by Henry Greely — is a report/study of the November 2018 event and controversy that erupted when a Chinese research, He Jiankui, showed up at a high level conference in Hong Kong and announced to all that he had edited the genes of two human fetuses and that one of them had resulted in a live birth of twins. The conference and the broader scientific community around the world that follows the science associated with CRISPR and related topics were thrown into substantial disarray. The scientist involved ended up going to jail in China, while the broader turmoil about gene editing has yet to subside.

An entire book about this? Sure! The thing to note here is that the science involved here is very new and very complex. It is also highly controversial bringing up ideas of dystopian futures, and government over involvement in individual lives at the same time that other long for the eradication of genetic disease and the improvement of humanity - or something like that. As might be expected as well, this fast moving and consequential science is wrapped up in the formation of new biotech firms, long lasting patent wars, and calls for government regulation. One of the principals in the events reported on in this book, Jennifer Doudna, won the Nobel Prize in Chemistry in 2020.

This is a book that reports on the events associated with He Jiankui’s experiments. The author is a well known law professor and ethicist who examines these events in terms of laws, regulations, professional standards, and ethics. He is not a scientist but is knowledgeable about the details of this affair and a marvelous story teller at explaining them to people who know neither law nor big time science. He also knows many of the people involved in the story. It is a very good book for a set of events that is hard for most to get their arms around.

So what is the related book to this? Walter Issacson’s recent biography of Jennifer Doudna - The Code Breaker - focuses on this same scientific area, but from the perspective of the scientists involved, especially Professor Doudna and her colleagues. The book covers the events of November 2018 and share some detail with Greely’s work.

Greely’s book focuses in on the legal and ethical issues raised by He Jiankui, along with the consequences of the disclosure of his work. To do this, of course, he needs to provide background on the science and the key developments around CRISPR and even earlier research. The book really shines by raising the institutional and legal dimensions that all sorts of non-scientists will also have to familiarize themselves with. The book also details the follow-up regarding which US scientists were involved with He’s project and how much did they know and/or support about the project once they heard of it. Without going into details, I will just say that when scientists go off on their own and in the process violate established rules and norms of behavior - as well as some laws - it does not end well. It appears to be an effective way to end a career. Depending on the norms that are violated — and gene editing babies for birth violates some big norms — then it is not good to be associated with such an efforts. While the results of investigations have not made front page news, it seems very clear that people in this area of the academy will be on their best behavior going forward. In case you want more, the book also provides a detailed critique of the research design of the He Jiankui work that goes into the weeds about what was wrong with the effort.

Greely’s book is not just for academics and science observers who can only look in on what the elites of this research can do. The issues raised by CRISPR and how it is used will continue to structure whole areas of life that are removed from the research bench. Big medicine is only going to get bigger and the science is going to restructure how this huge part of society develops. The hype that this science is a really big deal has something to it. Books that help non-scientists and non-lawyers under this do a great service to readers. Both of this books are superb and complement each other.

[Rishikesh Mishra · Rating 3 out of 5]

The book goes into a lot more detail into the ethics, legality, and scientific ego, with only a minimal but sufficient explanation of the crispr tech and genome editing. This is understable from a popular book (I can't call it a popular science book).

The central case study into He Jiankui's controversial experiment of unauthorized GM humans branches out into these topics, and concludes with strong apprehensions and call for regulations. While some old books can seem oddly timeless, the call to action and Greely's rather contemporary hopes and expectations about regulation against eugenics seem oddly out of time and place in the opportunistic fashion of the earth-state.

[Matt Bender · Rating 5 out of 5]

I stumbled on Greeley’s book, which is a study of a secretive Chinese researcher’s human eugenics project, which was revealed in 2018. It is also an argument about the ethical approaches that are needed in biotech research.

This book is excellent and succeeds at a lot of things. Readers get a descriptive section of CRISPER and other genomic research and an introduction into the field’s ethical and legal framework. Greeley also provides a detailed account of He J.K.’s “experiment” I at least three children, who their gnome edited before IVF. These experiments eventually led to He’s pariah status in the scientific community and and trial/imprisonment in China.

Greeley blends macro and thematic explanations with granular detail. The book follows the typical style of academic papers (descriptive then normative), but is well written. It’s as close to an academic thriller as possible.

Greeley, way more than necessary, qualifies his story and arguments with warnings that by the time of publication, research and events will have changed. He wrote this before the events of the last two years like the biotech equity price surge and rapid deflation and the panic about COVID vaccines. To be fair, reading a lay science piece without MRNA that avoids addressing those topics is refreshing.

Here’s what you’ll get from the book:

An intro to genomic research and CRISPER’s history with a focus on human germ line genome editing. This gives the reader a who’s-who of the leading researchers, institution and terms. The book by itself is worth reading for this, but you can probably find this info presented elsewhere.

A detailed story of the He debacle by someone who knows a lot of the people involved personally or by reputation. Greeley editorializes and contextualizes this story within the broader scientific, international and academic disputes extremely well.

An introduction into how academic research and international health institutions operate and their weakness and promise. (Topics like the international law, no binding institutional norms, and regulatory drug or research approval). Greeley especially gets into the legal and regulatory framework and compares Totalitarian China’s reaction and action (for better or worse) to He with the quick reaction condemning He’s project but more plodding action from the scientific Academy and international health institutions.

A look into the tragedy of a hotshot researcher who ignored ethics to recklessly leap into a dangerous project and his downfall along and a detailed autopsy of how rules and ethics need to adapt to advance science without a encouraging risk.

A lot of normative ethics talk with a focus on science and law.

An appreciation of the wonder of a human germ line genome, some skepticism on how natural, “natural selection” really, and more curiosity about biotech.

Recommend for nerds, biotech investors, lawyers, readers of the Economist, regulators, and anyone searching for a highbrow thriller. I would probably use this as a reading if I ever taught an admin or ethics course.

[Katie · Rating 4 out of 5]

Thanks to Netgalley and the publisher for an advanced copy.

In CRISPR People, Henry T. Greely lays out the background of the science, people, and field that lead to the first genetically edited babies; the response to the announcement of their birth; and a discussion of the implications, positives, negatives, regulations, and recommendations surrounding human gene editing.

I'm a biochemistry graduate student. Before Dr. He's announcement, we'd read and discussed a lot about the potential use of CRISPR for human germline editing. When Dr. He made his announcement, everyone I knew seemed shocked and appalled at Dr. He's gall. Even then, when discussing what should be done, it was clear that we were in murky waters.

As for the science, I can't say if it would be clear to a lay person. I didn't find any errors, though, and it doesn't seem that a deep understanding of the science is necessary to understand the impact of He's experiment or of the potential of genome editing.

Greenly's review of the background leading up to the announcement and response was good for perspective. It seemed unbiased and comprehensive.

I particularly liked the later section of the book in which Greenly discusses the realistic potential of human germline editing and how it can or should be controlled. He makes several good points that should relieve a lot of unrealistic fears about the technology, while also reviewing the good and bad of past attempts at regulation.

By the end, I don't know that I feel scientists are in any less murky waters. But Greenly's analysis does provide a strong argument that scientists (myself included) are responsible for the impacts of our fields on society. Basically, if we don't speak up, who will?

I'd recommend CRISPR People to all scientists, laypersons highly interested in biotechnology, and those who have an impact on policy.

[Emma Belica · Rating 3 out of 5]

Giving this book 3 stars but it’s complicated. After taking my science comm class, I’ve been a lot more critical of science communication specifically geared towards a wide audience. This book started excellent, it followed a story line. I loved the candidness of the writing and the chronological layout of the Jiangkui experiment. Unfortunately, after the chapters on the summit and the world reactions it started reading more like a textbook, which made it very hard to focus. I admit that skimmed some of the final chapters because it just felt a bit repetitive but overall it was a very interesting read, I just think it could’ve been a bit shorter.

[Ricardo Moreno Mauro · Rating 4 out of 5]

Acabo de leer un artículo en que decía "Tu te puedes cambiar de casa, de número de tarjeta de crédito, pero no de tu DNA". De esto es precisamente lo que se trata este libro. Hoy en día podemos cambiar nuestros genes. Esto podría ser "un milagro" para personas que tienen una enfermedad genética ¡pero que tal si queremos cambiar los genes en embriones. Siempre ha estado el temor en la ciencia ficción que se puedan diseñar niños, que se conviertan en una raza superior, que los padres puedan escoger el color de pelo, ojos y aptitudes. Bueno de esto se trata el libro, acerca de las implicancia, principalmente morales del poder que tenemos ahora los seres humanos de cambiar los genes ¿Se deberá hacer? ¿Cómo se podría regular? Este no es un libro de ciencia ficción, es un libro muy bien escrito y documentado que nos lleva a recorrer la ciencia actual y sus implicancias en nuestras vidas, en el futuro.

[billyskye · Rating 3 out of 5]

CRISPR People is a tonally perplexing book. On one hand, it meticulously assesses the issues surrounding the He Jiankui affair with a lawyer’s eye for specificity and precision, supporting its ~300 pages of text with another ~100 of endnotes. On the other, it is written at a reading level that I’d probably describe as ‘10th grade elective course’ and contains these quirky, personalized character profiles of certain doyens within the genetic engineering space that highlight everything from their professional accolades to their behavioral compatibility with the book’s author. In sum, this strange composite leaves the reader with a reasonably comprehensive primer on the topic at hand but one wanting for the depth necessary to truly satisfy.

Henry T. Greely divides his investigation into four segments. The first delivers a highly accessible overview of the discovery, mechanisms, and applications of CRISPR, while carefully defining key terms and detailing recent (scientific, ethical, and legal) developments within the field. The second and third allow the author to evaluate He Jiankui’s heretical experiment, which produced the first genetically edited humans, in earnest and provide an account of the ensuing fallout. While painting a more-or-less charitable portrait of the man, Greely is unequivocal in his condemnation of He’s actions. The book presents a compelling argument that “the experiment ha[d] at least five major problems: a terrible risk/benefit ratio; very questionable consent; inappropriate approval processes; complete opacity; and, finally, the violation of what came as close as possible in the world of science to an international consensus against germline genome editing,” ultimately recommending that He be ostracized by the scientific community for his reckless misdeeds in order to dissuade others from following in his footsteps.

The final section – in which the author discusses the prospects and ethics of this fledgling biotechnology – takes an unexpected turn. Despite his full-throated denunciation of He Jiankui, Greely presents himself as remarkably untroubled by human germline gene editing in general so long as it is performed with legal, regulatory, and broad societal approval. His concern is basically that it happened much too soon, not that it happened at all. Greely notes that the human genome has always changed over time and that this would by no means be the first instance in which humans have played a role in its augmentation. From the adoption of agriculture to the advent of modern medicine, “When humans change the environment in ways relevant to themselves, and thereby change the fitness pressures that environment imposes, humans inevitably change which genetic variations get selected for and against.”

Furthermore, as he sees it, a basic cost-benefit analysis indicates that “human germline genome editing, even if it turns out, eventually, to be safe and effective, has very few plausible good uses.” Greely divides its potential applications into three categories: “editing out disease-promoting genetic variations; editing in disease-preventing variations; and editing for enhancement, including ultimately to create new human species.” In the first case, Greely argues that other (safer, cheaper, and better understood) measures like pre-implantation genetic diagnosis (PGD) and somatic editing already exist and can screen out most harmful genetic conditions more effectively. For the second, he remains unconvinced that CRISPR provides the optimal preventative strategy, asking, “Why would we use germline gene therapy to introduce resistance to polio or cholera, instead of other preventive or treatment measures?”

Regarding enhancement – the most popularly captivating of the three cases – Greely notes that there are essentially no Mendelian enhancement genes, so developments in this arena will be a long time coming and that “these questions need not trouble us today. If (or when) they will arise, it will be the future, probably the far future, and we will all be dead. Our descendants will make up their own minds, no doubt little caring for our ancient thoughts.” His thoughts on the day, should it come: “the eventual replacement of Homo sapiens by one or more successor species? There is no reason to think our species will exist forever. And while we should be concerned about the individuals in our species who are alive, is there any reason other than a sentimental attachment, akin to a rooting choice among sports teams, to prefer our species in some indefinitely distant future?”

While Greely’s lawyerly tendances get the better of him on occasion as he explains away opposing arguments (in one especially pedantic flourish he insists that we cannot truly accuse CRISPR of introducing new mutations into the human genome because “we cannot be sure that the variant is not, or has never before been, seen in humans.”), his is a refreshingly sedate take compared with the histrionics, the prophesies of doom and boon that typically populate such assessments of disruptive technology. He has removed this topic from the clutches of science fiction in a very helpful way. Still, especially given how narrowly he has defined the subject of his book (no somatic editing, no editing of the rest of our biosphere), Greely’s refusal to engage more deeply with the existential concerns many have about human germline genome editing is a bit disappointing. Though of course not entirely rational (what is?), most would consider directed, permanent, artificial enhancement of the human mind and body to be a categorically distinct enterprise from the other forms of personal improvement humans have undertaken since the dawn of our species. See: the losing battle against doping in athletic competition. These issues bring to the fore troubling questions about identity, equity, agency, the futility of human accomplishment as it relates to individual ego, the dwindling teleology of the human spirit, etc in ways left completely untouched by this book.

Similarly, though Greely, a septuagenarian, may not feel that these concerns will assert themselves forcefully within his lifetime, it seems like somewhat of a cop-out to leave their contemplation entirely in the hands of future generations, especially when one is writing a book sporting the subtitle “The Science and Ethics of Editing Humans.” Would we not be grateful had the commercial titans of yore more seriously discussed the impact their industrial revolution might have upon the earth’s climate? Had those at the nascent edge of the internet’s untrammeled expansion more thoughtfully considered how to it might shape humanity? Were current innovators more coordinated in their attempts to minimize the horrors that may one day be wrought by empowered artificial intelligence? Greely writes that we have always “managed to muddle through, not perfectly but not catastrophically, in the past” when novel technologies arise, which is true. But we are accelerating somewhere less than ideal now, and, perhaps, this is partially because we have always put off these sorts of conversations until it is too late to do anything other than muddle.

[Jemini Willis]

What does the birth of babies whose embryos had gone through genome editing mean--for science and for all of us?In November 2018, the world was shocked to learn that two babies had been born in China with DNA edited while they were embryos—as dramatic a development in genetics as the 1996 cloning of Dolly the sheep. In this book, Hank Greely, a leading authority on law and genetics, tells the fascinating story of this human experiment and its consequences. Greely explains what Chinese scientist He Jiankui did, how he did it, and how the public and other scientists learned about and reacted to this unprecedented genetic intervention. The two babies, nonidentical twin girls, were the first “CRISPR'd” people ever born (CRISPR, Clustered Regularly Interspaced Short Palindromic Repeats, is a powerful gene-editing method). Greely not only describes He's experiment and its public rollout (aided by a public relations adviser) but also considers, in a balanced and thoughtful way, the lessons to be drawn both from these CRISPR'd babies and, more broadly, from this kind of human DNA editing—“germline editing” that can be passed on from one generation to the next. Greely doesn't mince words, describing He's experiment as grossly reckless, irresponsible, immoral, and illegal. Although he sees no inherent or unmanageable barriers to human germline editing, he also sees very few good uses for it—other, less risky, technologies can achieve the same benefits. We should consider the implications carefully before we proceed.

[Bonnie · Rating 5 out of 5]

In this brilliant book, law professor Henry Greely focuses on the story of He Jiankui, the Chinese scientist who in 2018 used CRISPR technology to edit two embryos to prevent the transmission of HIV from their father. don't really know if he was successful because his experiment is shrouded in secrecy. It was also impressively unethical. He used a technology on future children that had not been shown to be safe, he ignored the warnings from international colleagues that what he was doing was contrary to all existing guidelines, his informed consent process was laughable, and the signature from the IRB approving the experiment was forged. Greely argues that this kind of rogue experiment is very unlikely to occur in a country with established norms for evaluating and approving science. Scientists in the U.S., Canada, the UK, and Europe may complain about the hoops they're forced to go through, but they do prevent appalling mishaps of the kind represented by Dr. He. However, he also lauds the Chinese government for reacting swiftly to punish Dr. He. He was fired, fined, and sentenced to jail for three years. In addition to giving the reader extensive background on this case, and on CRISPR generally, Greely provides a wealth of information on the ethical and legal issues raised, in a readable, even rollicking style. Ultimately, he's skeptical that genetic modification, of either the somatic or germline kind, will prove as useful as other techniques for preventing or curing disease, and he's extremely skeptical that the technology could be used to enhance humans. Anyone interested in genetic modification will definitely want to read this book.

[Emma Hinkle · Rating 4 out of 5]

I've always been fascinated by the CRISPR babies fiasco first of all because I'm a geneticist by training, but I'm also fascinated by ethics and especially how genetic technologies will be used in the future. Thus, I've read extensively about He Jiankui and his many missteps. However, this book gave a different lens to view the issue because the author is a lawyer.

Greely while fully disagreeing with what Jiankui did brings up a lot of interesting points on what we consider as enhancement of humans (when we try to enhance ourselves through other means like exercise, mental stimulation etc.). I appreciated his lawyer take on germline gene editing because he brought up many points I hadn't thought of before because I always consider the scientific lense first. Ultimately, Greely only sees a potential for CRISPR for germline gene editing if there is a broad societal consensus and he decries science living in a vacuum and deciding things for itself.

[Mannie Liscum · Rating 4 out of 5]

Hank Greely, professor of law and bioethicist at Stanford University, has given us a splendid examination of the He Jiankui ‘CRISPR baby’ story. Greely is an exception writer, able to engage the reader in what, the wrong hands, could be a rather dry and acronym-laden philosophical and ethical presentation of a complex science and social issue. He however deftly handles the topic, content and issues, giving the reader a thoroughly enjoyable ride/read. While the end of the He story and future of germline genome editing in human is not entirely clear, Greely provide plenty of food for thought. 4.5 stars.

[Geoffrey Weiss · Rating 5 out of 5]

An excellent examination of the He Jiankui fiasco wherein three embryos were edited using CRISPR technology, implanted into the uteri of two Chinese women and brought to term. Henry Greely, a Stanford lawyer and bioethicist, addresses the numerous facets of this event and the broader picture of germline genome editing. He examines the role that Science did take and should have taken in rein ing in He's rogue venture into genetic modification of the three babies' genomes. His analysis of the ethical issues is comprehensive, a chilling indictment of He's role and a warning for future generations of scientists engaged in this powerful branch of science.

[Elliot Hart · Rating 4 out of 5]

This book has sparked an interest for me in genomics and gene editing. Bought it for my dad but when he was done I gave it a read too. I think the terminology was not too complex and I was able to understand (and recognise) most of the concepts having only done Biology at A-Level. I think some parts were fairly repetitive and while this would sometimes refresh me on ideas or people, it was also sometimes a bit annoying. Regardless, I found the perspectives in this book really interesting and it made me think about my own opinions on editing humans.

[NE · Rating 3 out of 5]

CRISPR People: The Science and Ethics of Editing Humans was written by Henry Greely, a lawyer and Stanford professor specializing in the ethical and legal implications of biomedical technologies like genetic manipulation. A majority of this book was focused on explaining the actions of Chinese scientist, He Jiankui. Greely explained how in 2018, He Jiankui "secretly" and unethically genetically edited human babies, Lulu and Nana, using CRISPR technology. Greely discussed implications for such actions and concerns about DNA editing that can be passed down to other generations (gremlin editing). This book was densely packed with information and at times hard to process.

[Sam · Rating 3 out of 5]

This book is mostly legal view on the topic of human germline genome editin. There are some interesting historical flashbacks on self-regulation/censorship of the scientific community with regard to their research. This is interesting in terms of how those self-imposed rules grew into state policies. Other than that, I think that human germline genome editing would become available as soon, as it shows reproducible and assessable results. That was the main problem (except for ethical issues) with He’s experiment.

[Clayton Ellis · Rating 3 out of 5]

Learning about the ethics and details behind He' CRISPRd children was informative. Greely has some established thoughts on the future of CRISPR and how it might be used in the intervention of the disease. He is more learned and experienced than I am, but I had some difficulty interpreting his views as the absolute truth OR the only way to look at it. I will use aspects of this book in my practice, so thank you for the ethics journey.

[Gracious Wyatt Draher · Rating 5 out of 5]

I mean wow. This book has EVERYTHING I could ever want in a book: fascinating developmental and cellular biology research, tons of philsophical questions and thought experiments, unbelievable drama in the scientific community, sassy commentary, and an endless buffet of bioethical questions to ponder. Shoutout to Greely to making my favorite nonfiction read of the year so far, I thoroughly enjoyed that, even if I do find the legal side of bioethics to be the less interesting side.

[David Tagliaferri · Rating 5 out of 5]

I found this book fascinating. I initially knew little about the topic but found the history and details thoroughly engaging. While reading, I often thought of science fiction books and shows like Star Trek, comparing their ethical assessments to the realities described in the book. It was intriguing to contrast fiction with reality and reflect on what we can currently achieve in comparison to what is imagined in fiction.

[BookCrazy · Rating 4 out of 5]

A very thorough investigation into the history of genetic engineering.

After the announcement of the Nobel Prize in Chemistry 2020, I started reading about the development of this technique. In this book, I found a lot more interesting details and context information. It also raises some questions regarding our ethics and morals.

[Emily Taylor · Rating 4 out of 5]

This book was dense, but oftentimes not to a fault. This was a comprehensive view of not only human genome editing technologies but of “Science” as a whole. The world of Science is transforming daily, and it is a highly bureaucratic process, complete with special attention to laws, regulations, and gauging social acceptance. I think this book did a great job of acting as a guide to this world.

[Ami · Rating 3 out of 5]

From the moment the story broke of gene-edited babies being born in China there has been an intense ethical and scientific debate. Although confusing and repetitive at times, Greely effectively explores the — often opposing — scientific and ethical pros and cons, concluding that in essence, science is moving and evolving at a pace faster than current legislation can keep up with.

[Satheesh Kumar · Rating 3 out of 5]

Not an easy read, and really only caters to a select audience interested in how gene editing should proceed and the legislation that should be implemented. Felt it could have been made more accessible to a larger audience.

[Jenn Hartlove · Rating 5 out of 5]

Great book and very accessible for the non-technical reader. Greely lays out clearly the Hu Jiankui "case" and deftly explores the dynamics of the science of human germline editing, but also menu of potential implications and considerations. Highly recommend.

[Kalyn Brown · Rating 3 out of 5]

The book was a great account of the experiment and the fall out. However, the last section discussing the future of embryo editing and regulations seemed to drag on a little more than I would prefer.

[Sue · Rating 4 out of 5]

I found this book to be very interesting. I enjoy science and technology so I was very interested in reading it.

[lan¡ · Rating 3 out of 5]

Read this for EPQ as well, my brain hurts

[Anette · Rating 5 out of 5]

Some parts almost read like a thriller. Very interesting dive into CRISPR and especially what happened with He Jiank.

[Nathan Hoyt · Rating 4 out of 5]

This topic has fascinated me and not only improved my understanding f CRISPR, but gave me more of the background and history of those bringing it forward.

[Gavin Blank · Rating 3 out of 5]

It was really good for my thesis. Not sure how worth it is outside of that. Very scientific and uses advanced language.

[Rebecca Surroz · Rating 4 out of 5]

Interesting! Does a good job breaking down the science of human gene editing and explaining what was done to the edited babies in China.