The Mutant Project: Inside the Global Race to Genetically Modify Humansby Eben Kirksey. St. Martins Press, November 2020. Excerpt previously published by Black Inc.
Surreal artwork in the hotel lobbya gorilla peeking out of a peeled orange, smoking a cigarette; an astronaut riding a cyborg giraffewas the backdrop for bombshell news rocking the world. In November 2018, Hong Kongs Le Mridien Cyberport hotel became the epicenter of controversy about Jiankui He, a Chinese researcher who was staying there when a journalist revealed he had created the worlds first edited babies. Select experts were gathering in the hotel for the Second International Summit on Human Genome Editinga meeting that had been called to deliberate about the future of the human species. As CNN called the experiment monstrous, as heated discussions took place in labs and living rooms around the globe, He sat uncomfortably on a couch in the lobby.
He was trying to explain himself to Jennifer Doudna, the chemist at UC Berkeley, who is one of the pioneers behind CRISPR, a new genetic-engineering tool. Doudna had 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. As He went through his laboratory protocol, describing how he had manipulated the genes of freshly fertilized human eggs with CRISPR, Doudna shook her head. She knew that this moment might be coming someday, but she imagined that it would be in the far future. Amid the bustle of hotel guests, science fiction began to settle into the realm of established fact.
St. Martins Publishing Group
I was checking in to Le Mridien as the story broke and first heard rumors about Hes babies while chatting in the elevator with other summit delegates. We had come to Hong Kong to discuss the science, ethics, and governance of CRISPR and an assortment of lesser-known tools for tinkering with DNA. Struggling to overcome intense jet lagfresh off planes from Europe, the United States, and other parts of Asiawe listened to speculation in the hotels hallways while swimming through reality, caught between waking and dreaming.
Opening the door to my hotel room, a luxury suite courtesy of the U.S. National Academy of Sciences, I hunted for reliable sources of information online. I had been invited to speak on the research ethics panel, after Jiankui He, so I needed to play catch-up, fast. I found YouTube videos posted by Hes lab just hours before, offering details of the experiment. Posing in front of his laboratory equipment, with a broad smile on his face, He announced to the world: Two beautiful little Chinese girls, named Lulu and Nana, came crying into this world as healthy as any other babies a few weeks ago. The experiment aimed to delete a single gene with CRISPR. This new technique of genetic surgery, He claimed, could produce children who were resistant to the HIV virus.
Hunched over the glowing screen of my laptop, I perused the opinions that were just starting to form. Chinese media pundits suggested that a Nobel Prize might be in the making, saying that He was following in the footsteps of scientists who produced the first controversial test-tube baby in 1978. A raucous debate was taking place on WeiboChinas prominent social media platformas 1.9 billion people viewed the hashtag # (#FirstGeneEditedHIVImmuneBabies). Some Chinese influencers were praising Jiankui He as a national scientific hero. Others condemned him, saying that it was shameful to treat children like guinea pigs. Journalists were starting to discover Dr. Hes ties to biotechnology companiesone reportedly worth US$312 millionand alleged that there were serious financial conflicts of interest.
Anyone who follows the news knows the basic story. Over the next few days, Jiankui He experienced a meteoric rise to fame, followed by a dramatic fall from grace. Eventually, he lost his university job and was thrown in jail. A district court in China sentenced him to three years in prison for practicing medicine without a license, denouncing his pursuit of personal fame and profit.
Dr. Hes story is a gateway into a much bigger enterprise: the tale of CRISPR and the emergence of genetic medicine. The gala was quietly abuzz with news of other efforts to genetically modify humans. Experiments were already underway in England, the United States, and many other labs in mainland China. As billionaires and Wall Street investors were getting in on the action, as scientists and doctors were making careers out of CRISPR, I wondered: Who counts as a visionary, and who becomes a pariah?
He spoke about his gene-editing experiment that led to the birth of twin girls while at a summit in Hong Kong in 2018. VOAIris Tong/Wikimedia Commons
He was not alone in the pursuit of fame and fortune. It seemed like none of the scientists at the gala were innocent of financial conflicts of interest. Collectively, these enterprising biologists had already raised hundreds of millionsfrom venture capitalists, big pharma companies, and the stock marketfor genetic engineering experiments in human patients. I overheard excited chatter about new investment opportunities. The first gene therapy, a cancer treatment, had recently been approved in the United Stateswith a US$475,000 price tag. While the scientists gushed about the CRISPR revolution, I was quietly thinking about how genetic medicine is producing other upheavals in society. Profit-driven ventures in research and medicine were producing a new era of dramatic medical inequality.
As market forces propelled CRISPR into the clinic, I set out to answer basic questions about science and justice: Who is gaining access to cutting-edge genetic medicine? Are there creative ways to democratize the field? Panning out, I also explored questions that could have profound implications for the future of our species: 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?
As a cultural anthropologist, I have often found myself opposing biologists in debates about human nature. Ever since Margaret Mead wrote her 1928 classicComing of Age in Samoa, anthropologists have argued that a persons life is shaped by the social environment in which each is born and raised rather than genetic heredity alone.Anthropologists have recently joined other progressive thinkers to imagine how science has enabled new experimental possibilities for human beings.Now we are studying how the human social environment has been shaped by synthetic chemistry, smartphones, the internet, and biotechnology.
My goal has been to map how genetic engineering will transform humanity. Rather than limit my research to a single culture, I followed CRISPR around the globe. I tracked the impact of this gene-editing tool as it traveled from media reports to laboratories, through artificial intelligence algorithms, and into the cells of embryos and the bodies of living people. Using an anthropological lens, I examined new forms of power as scientists, corporate lobbyists, medical doctors, and biotechnology entrepreneurs worked to redesign life itself.
I will offer you a mosaic portrait. This is a story of people and concerns on either side of the dynamics of power that has emerged with CRISPR. I moved among the powerful in their native habitats: conferences, fancy hotels, restaurants, corporate offices, and cluttered labs. To understand how social inequality is changing in this brave new world, I also interviewed chronically ill patients, disabled scholars, and hackers. From the power centers to the margins, I went where I could find answers. Very old conflicts were playing out even as new technologies transformed science and medicine.
An exhibit on reproductive technologies at the China National GeneBank envisions a future where robots rear human embryos. Eben Kirksey
When I set out to meet some of the first genetically modified people, I found activists who were battling insurance agents and biotechnology companies for potentially lifesaving treatments. Nearly a decade before Dr. He stirred up controversy in China, a small group of HIV-positive gay men in the United States quietly participated in a clinical trial dubbed the first-in-man gene-editing experiment. Researchers aimed to delete a gene from these menthe same DNA sequence later targeted by Hein hopes of engineering resistance to the virus and repairing damage to their immune systems from AIDS. One veteran HIV activist who participated in this study, Matt Sharp, convinced me that having his DNA altered wasnt a big deal and that genetic engineering does indeed have real medical promise. Sharp also confirmed my suspicions: Biotech companies are putting profits ahead of human health as they search for lucrative applications of gene editing in the clinic.
Gene editing is not a particularly good metaphor for explaining the science of CRISPR. With a computer, I can easily cut and paste text from one application to another, or make clean deletionsletter by letter, line by line. But CRISPR does not have these precise editorial functions. CRISPR is more like a tiny Reaper drone that can produce targeted damage to DNA. Sometimes it makes a precision missile strike, destroying the target. It can also produce serious collateral damage, like a drone attack that accidentally takes out a wedding party instead of the intended target. Scientists often accidentally blast away big chunks of DNA as they try to improve the code of life. CRISPR can also go astray when the preprogrammed coordinates are ambiguous, like a rogue drone that automatically strikes the friends, neighbors, and relatives of suspected terrorists. CRISPR can persist in cells for weeks, bouncing around the chromosomes, producing damage to DNA over and over again every time it finds a near match to the intended target.
How much can we actually change about the human condition by tinkering with DNA?
It is important to signal a sense of risk or a need for caution in using CRISPR. Other metaphorslike genetic surgery or DNA hackinghave been proposed to replace the idea of editing. The idea of genetic surgery suggests that there can be a slip of the surgeons knife, creating an unintended injury. Each of these imagesthe targeted missile, the surgeons scalpel, the hackers codeoffers a perspective on how CRISPR works, even while concealing messy cellular dynamics. In the absence of a perfect metaphor, ultimately, I think that technical language describes it best: CRISPR is an enzyme that produces targeted mutagenesis.
In other words, CRISPR generates mutants.
Strictly speaking, we are all mutants. At a molecular level, each of us is unique. Each of us starts life with 4080 new mutations that were not found in our parents. From birth, each of us has around 20 inactive genes from loss-of-function mutations. During the course of a normal human life, we also accumulate mutations in our bodies, even in our brains. By the time we reach age 60, a single skin cell will contain between 4,000 and 40,000 mutations, according to a study in theProceedings of the National Academy of Sciences. These genetic changes are the result of mistakes made each time our DNA is copied during cell division or when cells are damaged by radiation, ultraviolet rays, or toxic chemicals. Generally, mutations arent good or bad, just different.
Mutants in popular culture play important roles in our high-tech myths. Some cartoons simply celebrate mutation as whimsical possibility. The pizza-eating Teenage Mutant Ninja Turtles are known for fighting crime in support of established law and order. Darker speculative fiction uses mutants to illustrate the hypocrisy and inhumanity of the scientific establishment. Violent experiments on children who were born with special abilities feature in recent Netflix series likeStranger Things. Horror flicks and video games featuring mindless zombies and flesh-eating mutants have a common theme: Science could create monsters that cannot be controlled.
Reporters who sounded the alarm about Lulu and Nanas birthcalling them freaky CRISPR Frankenbabiesclearly had not done their literary homework. Frankensteins monster is now popularly imagined as a dimwitted giant with electrodes in his neckfollowing imagery from the first black-and-white film, put out by Universal Pictures in 1931. The originalFrankenstein, Mary Shelleys gothic novel from 1818, described a superhuman creature that was driven by the desire to be loved. The highly intelligent, articulate, and high-minded creature only turned violent when he was shunned by human society. Amid the controversy about Dr. Hes experiment, a political theorist and literary scholar named Eileen Hunt Botting defended the rights of genetically modified children to live, love, and flourish. Flipping the mainstream script, she wrote an essay for TheWashington Postsuggesting that Frankenstein is an apt cautionary tale about the possibility of devastating discrimination against a bioengineered child.
Some media reports on Lulu and Nana, the first known gene-edited human babies, referenced the science-fiction character Frankenstein (shown here from the film by that name). Universal Pictures/Wikimedia Commons
During my international adventures in the world of CRISPR research, I kept science fiction classics close at hand. The rich archive of speculative fiction has helped me understand the perils and potential of experiments that are remaking the human species.
Scientists have identified some geneslike those associated with eye and skin colorthat would be relatively easy to manipulate. One Russian American gene-editing expert, Fyodor Urnov, intimated that it should be biologically possible to engineer soldiers or athletes with enhanced endurance, speed, and muscle mass. Genetic enhancements come with serious health risks, but military leaders have a long history of ignoring the health and well-being of their soldiers. Fertility clinics also have a bad track record as profit-driven enterprises, ready to sell couples expensive and scientifically unproven treatments. The New Hope Fertility Center in Manhattan is already advertising a new technique: Couples could soon have the opportunity to create designer babies with CRISPR.As scientists speculate about post-racial futures and nightmare military scenarios, as market forces bring new genetic technologies into the clinic at a dizzying speed, it is time to slow down and establish some clear rules for the road. Misguided attempts to improve the human species have already produced atrocitieslike the Nazi death camps that systematically eliminated homosexuals and Jews from the population. In the wrong hands, CRISPR could have devastating consequences for humanity.
This excerpt has been edited slightly for style and length.
* Clarification: This quote comes from A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution, written by Jennifer Doudna and Samuel Sternberg.
Follow this link:
- UC Davis Health's partnership in telegenomics improves accessibility to genetic medicine with telemedicine robots - The Aggie - The Aggie - September 5th, 2021
- Could gene therapies be used to cure more people with HIV? - aidsmap - September 5th, 2021
- What to expect at the FDA's two-day meeting on gene therapy safety - BioPharma Dive - September 5th, 2021
- Global DNA Sequencing Report 2021: There is a Move Toward a More Consumer-Focused Model - Yahoo Finance - September 5th, 2021
- Agathos Biologics Receives $900,000 from the North Dakota Bioscience Innovation Grant Program - Yahoo Finance - September 5th, 2021
- New gene therapies may soon treat dozens of rare diseases, but million-dollar price tags will put them out of reach for many - The Conversation US - September 5th, 2021
- An ethical analysis of divergent clinical approaches to the application of genetic testing for autism and s... - Physician's Weekly - September 5th, 2021
- Intense exercise could trigger ALS in those with genetic risk - Livescience.com - September 5th, 2021
- UT Southwestern selected top health care employer in Texas by Forbes - UT Southwestern - September 5th, 2021
- Opinion: Gene editing can be leveraged for the greater good with appropriate regulations - Varsity - September 5th, 2021
- Beefing up livestock disaster assistance | Farm & Ranch | willistonherald.com - Williston Daily Herald - September 5th, 2021
- Precision Medicine Platform Aims to Advance Cancer Gene Therapies - HealthITAnalytics.com - February 11th, 2021
- Celebrate the Third Annual Medical Genetics Awareness Week April 13-16, 2021 - PRNewswire - February 11th, 2021
- The race to treat a rare, fatal syndrome may help others with common disorders like diabetes - Science Magazine - February 11th, 2021
- Myriad Genetics to Participate in Multiple Upcoming Health and Technology Conferences - GlobeNewswire - February 11th, 2021
- Neurons from patient blood cells enable researchers to test treatments for genetic brain disease - Brown University - February 11th, 2021
- The science behind those afternoon naps Harvard Gazette - Harvard Gazette - February 11th, 2021
- Ensoma Launches to Pioneer Next-Generation In Vivo Approach to Deliver First Off-the-shelf Genomic Medicines - Business Wire - February 11th, 2021
- Im 28 and I Dont Know My Family HistoryHeres How That Affects My Health - Well+Good - February 11th, 2021
- Ensoma Launches with $70 Million Series A and Takeda Licensing Deal - BioSpace - February 11th, 2021
- Response to Cancer Immunotherapy May Be Affected by Genes We Carry from Birth - UCSF News Services - February 11th, 2021
- NeuBase Therapeutics Reports Financial Results for the First Quarter of Fiscal Year 2021 - GlobeNewswire - February 11th, 2021
- PM Modi Waives off Rs 6 Crore Tax on Imported Medicine for 6-month-old Baby Girl from Mumbai - News18 - February 11th, 2021
- GeneSight Psychotropic Test's Combinatorial Approach Proves Better than Single-Gene Testing at Predicting Patient Outcomes and Medication Blood Levels... - February 11th, 2021
- Reflections on the 20th Anniversary of the First Publication of the Human Genome - Scientific American - February 11th, 2021
- Stem Cell Study Illuminates the Cause of a Devastating Inherited Heart Disorder - Newswise - February 1st, 2021
- Mysterious untreatable fevers once devastated whole families. This doctor discovered what caused them - CNN - February 1st, 2021
- Decibel Therapeutics and Invitae Announce Launch of Amplify Genetic Testing Program - BioSpace - February 1st, 2021
- CCMB team identifies variants of genes that metabolise drugs - BusinessLine - February 1st, 2021
- Digbi Health's gut-microbiome and genetic-based obesity management program now allows 60,000 Doctors and Providers in Blue Shield of California's... - February 1st, 2021
- Copy number variations linked to autism have diverse but overlapping effects - Spectrum - February 1st, 2021
- Are Gene Therapies the Medicine of the Future? - BioSpace - February 1st, 2021
- Exploring the Relationship Between the Microbiome, Precision Medicine and Cancer - Technology Networks - February 1st, 2021
- Press Registration Is Now Open for the 2021 ACMG Annual Clinical Genetics Meeting - A Virtual Experience - PRNewswire - February 1st, 2021
- 4 New Life Sciences Licensing Deals and Investments to Watch - BioSpace - February 1st, 2021
- SMART Study Finds 22q11.2 Microdeletion Prevalence Much Higher than Expected - PRNewswire - February 1st, 2021
- Genomes, Maps, And How They Affect You - IFLScience - February 1st, 2021
- Are Phages Overlooked Mediators of Health and Disease? - The Scientist - February 1st, 2021
- Two Gene Therapies Fix Fault in Sickle Cell Disease and -thalassemia - MD Magazine - February 1st, 2021
- The First Targeted Therapy For Lung Cancer Patients With The KRAS Gene MutationExtraordinary Results With Sotorasib - SurvivorNet - February 1st, 2021
- Atsena Therapeutics Raises $55 Million Series A Financing to Advance LCA1 Gene Therapy Clinical Program, Two Preclinical Assets, and Novel Capsid... - December 17th, 2020
- Locanabio Announces $100 Million Series B Financing to Advance Portfolio of Novel RNA-Targeted Gene Therapies for Neurodegenerative, Neuromuscular and... - December 17th, 2020
- NeuBase Therapeutics Announces Positive Preclinical In Vivo Data for PATrOL-enabled Anti-gene for the Treatment of Myotonic Dystrophy Type 1 -... - December 17th, 2020
- Genetic Analysis Services Market: Uptake of Next-generation Sequencing and Multi-gene Tests to Drive Market - BioSpace - December 17th, 2020
- FDA Clears Genetic Modification in Pigs for Biomedicine and Food - The Scientist - December 17th, 2020
- Key Genes Related to Severe COVID-19 Infection Identified - The Scientist - December 17th, 2020
- UNLV Researcher on the Curious Case of COVID-19 Reinfection - UNLV NewsCenter - December 17th, 2020
- Genomics and medicine it's complicated | Health | willistonherald.com - Williston Daily Herald - December 17th, 2020
- Emedgene collaborates with Illumina to scale the interpretation of genomic data for rare diseases - PRNewswire - December 17th, 2020
- Polymerase Chain Reaction Market | Increased Outbreak of Infectious Diseases to Accentuate Demand in the Market - BioSpace - December 17th, 2020
- LogicBio Therapeutics names Daphne Karydas and Jeff Goater to Board of Directors - BioSpace - December 17th, 2020
- rBIO Achieves Crucial Milestone on Mission to Lower the Cost of Insulin by 30% - BioSpace - December 17th, 2020
- Report: More than 1,300 Medicines and Vaccines in Development to Help Fight Cancer - PRNewswire - December 17th, 2020
- San Diego's Locanabio raises $100 million for treatments aimed at degenerative diseases - The San Diego Union-Tribune - December 17th, 2020
- Worldwide SNP Genotyping Industry to 2025 - Pharmacogenomics Led the End-user Segment of the SNP Genotyping Market - ResearchAndMarkets.com - Business... - December 17th, 2020
- Potential Weakness in SARS-CoV-2 Discovered Single Protein Needed for COVID-19 Virus to Reproduce and Spread - SciTechDaily - December 17th, 2020
- Landing of $75M expansion of Texas-based Taysha adds to Triangle's growing gene therapy hub - WRAL Tech Wire - December 17th, 2020
- Track the Vax: What Do We Need to Know About the New Vaccines? - Everyday Health - December 17th, 2020
- Medical history from the year you were born - Quad City Times - December 5th, 2020
- Sarepta Therapeutics to Share Clinical Update for SRP-5051, its Investigational PPMO for the Treatment of Duchenne Muscular Dystrophy - GlobeNewswire - December 5th, 2020
- Biochip Market | Increased Popularity of Personalized Medicine to Boost the Market Growth | Technavio - Business Wire - December 5th, 2020
- December: Baby birth weight research | News and features - University of Bristol - December 5th, 2020
- Global Next Generation Sequencing Market (2020 to 2026) - Growth, Trends, Competitive Landscape, and Forecasts - GlobeNewswire - December 5th, 2020
- NIH researchers link cases of ALS and FTD to a mutation associated with Huntington's disease - National Institute on Aging - December 5th, 2020
- Precision Medicine Market Poised to Grow at 11.5% By 20227 - GlobeNewswire - December 5th, 2020
- Fact check: mRNA vaccines kept at very cold temperatures so that they do not break apart; COVID-19 vaccines will not genetically modify humans -... - December 5th, 2020
- Stoke Therapeutics Announces Presentations Related to the Company's Work to Advance STK-001, the First Potential New Medicine to Target the Underlying... - December 5th, 2020
- King George III's illness debunked as symptom 'caused by medicine prescribed to him' - Express - December 5th, 2020
- Stoke Therapeutics to Present at the Needham Virtual Epilepsy & Pain Specialty CNS Therapeutics Conference - Business Wire - December 5th, 2020
- Following the science: the writers who have made sense of Covid - The Guardian - December 5th, 2020
- Gene experts claim they identified human genes that can protect against Covid-19 - CNBC - November 23rd, 2020
- Genome Medical Reaches 90 Million Covered Lives in US - PRNewswire - November 23rd, 2020
- Sarepta Therapeutics Named One of The Boston Globe's Top Places to Work 2020 - GlobeNewswire - November 23rd, 2020
- New Study Highlights the Importance of Genetic Testing for Pancreatic Cancer Patients - PRNewswire - November 23rd, 2020
- Baylor Genetics Launches Combination Test for COVID-19 and Influenza A and B; Multi-Panel Test Seeks to Address Dilemma of "Overlapping symptoms... - November 23rd, 2020
- CHOP Researchers Reverse Severe Lymphatic Disorder in Patient with Noonan Syndrome by Targeting Genetic Pathway - BioSpace - November 23rd, 2020
- Myriad Genetics Announces Global Expansion of Myriad myChoice Tumor Testing in Europe and China - GlobeNewswire - November 23rd, 2020
- Epigenetics and pulmonary diseases in the horizon of precision medicine: a review - DocWire News - November 23rd, 2020
- Four years after landing in US, graduating ISU senior is on his way to medical school - Iowa State University News Service - November 23rd, 2020
- Lethal brain infections in mice thwarted by decoy molecule - Washington University School of Medicine in St. Louis - November 23rd, 2020