38 results
Index
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 279-292
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24 - The Hourse has Already Bolted
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 239-246
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Helen O’Neill's laboratory at University College London is within walking distance of the King's Cross train station. Stately edifices with domed atriums flanked by Greco-Roman columns gave way to brick buildings as I made my way toward the Institute for Women's Health. Walking down a back alleyway, I found a handful of sketchy white guys—one with a black eye—milling around. I pushed a button beside the door, and a jarring buzzer went off. Dr. O’Neill popped out in a matter of seconds and took me up to her office, a cramped boxy room with a whiteboard, a coatrack, and a bunch of greeting cards pinned up behind the desk. An old-school microscope was sitting on her desk—there in case she needed to remove a splinter, she said.
We talked in December 2019, a year after we shared brunch in Hong Kong. O’Neill was biding her time, waiting for an auspicious moment to submit her own proposal for genetic surgery in human embryos. Initially, when the news first broke from the summit, proponents of the technology were unified in their reaction to Dr. He's experiment. Everyone was sending the same message on Twitter, according to Dr. O’Neill: “This is an outrage!” “I agree, it's an outrage.” Now experts in reproductive medicine were taking small steps to begin CRISPR experiments of their own.
“I have no doubt that there will be CRISPR clinics integrated into a lot of IVF facilities,” Dr. O’Neill said. “All you need is a tiny bit of extra bench space.”
“Why is everyone so obsessed with DNA?” she asked me rhetorically. The products of twentieth-century science have already resulted in changes to the human population that will carry forward to future generations. She wondered why there has been so much public outcry about CRISPR: “Are we doing any worse than what we’ve already done to the planet with chemicals and pollution?” Industrial chemicals like BPA are found in plastic containers that store food and beverages, she said. The brains of fetuses, infants, and children can be harmed by BPA exposure, leading to changes in behavior and fertility. “Endocrine-disrupting chemicals are in every product that we have,” she added. “There's almost no going back from that.”
18 - Beautiful Lies
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 186-205
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When Paul initially saw the advertisement in April 2017—offering free experimental fertility treatments to HIV-positive men—he suspected that it was an internet scam. A Chinese law prohibits fertility clinics from offering services to people with sexually transmitted diseases. So he thought that these “scientists” might just be trying to take his money. Taking a gamble, he decided to share his contact details with the researchers via WeChat. As fate would have it, Paul and his wife became the first participants in Dr. He's research project. They signed up because they wanted a baby and they supported one of the big project goals: a cure for HIV.
News of the experiment had come from a trusted source: China's largest mutual aid organization for HIV-positive people, Baihualin, or White Birch Forest. More than 50,000 people, mostly gay and bisexual men, follow this group's WeChat account.
Around 300 people responded to the initial WeChat ad, including Paul (a pseudonym I’m using to protect his identity). The laboratory staffsent them a basic survey but did not initially reveal much about the details of the experiment. Paul responded to simple questions: What is your age? Are you married? What is your highest level of education? Are you or your partner infected with HIV? They also asked: Would you be interested in learning more about a new gene therapy that could reduce your children's risk for becoming infected with HIV?
The laboratory was looking for married couples with an HIV-positive man and an HIV-negative woman. They wanted to find people with university degrees, as Dr. He wanted to ensure that participants had enough educational background to have a basic understanding of science. Within days of the initial advertisement about the experiment, the laboratory was overwhelmed by volunteers.
After texting with the couples over WeChat, Dr. He's stafffollowed up with phone calls. They zeroed in on twenty eligible couples who seemed like the best fit. Then two researchers, an embryologist named Dr. Jinzhou Qin and a postdoctoral researcher who studied monkeys, packed their bags and started traveling around China. They visited the potential experimental subjects in their own homes.
20 - Mixed Wisdom
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 216-219
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Shortly after the birth of Lulu and Nana, Dr. Jiankui He went on a short jaunt to Hainan, a tropical island known for beach resorts and medical tourism. The Chinese government had established a special zone for medical experimentation here, with regulations designed to promote cutting-edge medical research. The provincial government was encouraging “research that is forbidden or controlled elsewhere,” as Cory Doctorow reports in Boing Boing. The special medical zone of Hainan was inspired by Shenzhen's special economic zone. Foreign capital was welcome alongside international “talent, technology, devices and drugs,” according to Doctorow.
Dr. He was traveling to Hainan with John Zhang, a Chinese American gynecologist who was no stranger to controversy. According to the Washington Post, Dr. Zhang “is blowing up the way humans reproduce” by conducting experiments in spaces with little regulation. after earning his PhD from the University of Cambridge in England, Zhang moved to New York City, where he made headlines for helping a forty-nine-year-old woman become the oldest person to carry her own child. He is perhaps most renowned (or infamous) for commercially producing the world's first “three-parent” baby in 2016, by transferring nuclear DNA from one mother into a healthy donor egg from another mother. The baby inherited most of its recognizable genetic traits from the first mother, but the second mother also contributed DNA inside the egg's mitochondria—tiny oblong structures, or organelles, that provide cells with energy. Dr. Zhang created this embryo in the United States and then transferred it to the mother's uterus in Mexico, triggering a stern warning from the FDA: “Such human subject research cannot legally be performed in the United States. Nor is exportation permitted.”
Dr. He and Dr. Zhang brought a large entourage with them to Hainan. A Chinese supermodel was along for the ride, a woman who was the public face of Mixed Wisdom, an IVF marketing company that was recruiting patients from mainland China. Ryan Ferrell was there, along with other collaborators who were helping plan a new experimental fertility clinic, including an executive from Vienomics Biotech, one of Dr. He's Shenzhen start-ups. All told, the posse had ten members. They had already sent a proposal to the provincial government, promising to establish a full-time R&D team of 300 people, including 100 doctors. Two vehicles picked them up at the airport.
17 - A Hammer, Looking for a Nail
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 182-185
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Jennifer Doudna was in the audience when Dr. He presented results from his early CRISPR research at Cold Spring Harbor Laboratory in August 2016. Posting a selfie with Doudna, He gushed on social media: “CRISPR gene editing has matured!” Later, Doudna invited him to a workshop in Berkeley in January 2017. Dr. He presented his latest findings and hinted that he was thinking about bringing CRISPR into the clinic. One biologist in the audience, an amateur bluegrass musician named Steven Block, implied that “cowboy science” was the only way that this would be accomplished.
While Doudna was not briefed on He's full plans, she was part of a relatively large circle of international scientists with specific knowledge of his research trajectory. Jon Cohen, a journalist at Sciencemagazine, reports that there were “five dozen people who were not part of the study but knew or suspected what He was doing before it became public.” Some people, like Matthew Porteus of Stanford, opposed and challenged his plans, saying that an irresponsible experiment could spell an end to the field of genome editing. Others, like his postdoctoral advisor, Stephen Quake, encouraged him to proceed with caution.
James Watson, the Nobel laureate who had become infamous for his controversial remarks about race and gender, visited Dr. He's university in April 2017, as the embryo engineering experiment moved into the clinic. After Watson gave a public lecture at the Shenzhen International Precision Medical Summit, there was a public Q&A session. Dr. He asked if the possibility of rewriting the genetic code had been on his mind as he published his famous paper with Francis Crick describing the double helix structure of DNA. Watson replied that yes, of course it had. As a follow-up, Dr. He asked: What should we do with gene editing? Watson simply said: Make people better.
Dr. He's team was testing out the CRISPR technology in human embryos and then sequencing their DNA to see if it could reliably produce genetic changes. It was as if he misinterpreted a famous quote from the esteemed psychologist Abraham Maslow: “If the only tool you have is a hammer, it is tempting to treat everything as if it were a nail.” Amidst all of the other genetic engineering tools at his disposal, Dr. He was trying out CRISPR. He was searching for a good target in the genome to hit.
14 - #Transracial
- Eben Kirksey, Deakin University, Victoria
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- Book:
- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 149-161
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Tamara Pertamina, a transgender artist who lives in a sprawling Southeast Asian slum, hopes to decolonize the science of genetic engineering. One day in June 2018 she borrowed a cart from a street food vendor and gave it a quick makeover. A hand-painted sign and logo announced, “CRISPR Sperm Bank: Experience Trans-Species Possibilities.” The food cart was a makeshift wooden contraption that balanced on bicycle wheels—a common sight on the streets of Yogyakarta, an Indonesian city with vibrant night markets and a cutting-edge arts community. While Jiankui He was quietly proceeding with his experiment in Shenzhen some 2,000 miles to the north, Tamara was dreaming about how biotechnology innovations in China and the United States would have reverberating impacts on the rest of the world.
As Tamara pushed her makeshift CRISPR Sperm Bank through the streets with some of her transgender friends, most passersby were startled and amused. The project was a surprise installation on the sidelines of Art Jog 2018, an international festival. Catcalls from young Indonesian boys on motorbikes—“I want to buy some!”—suggested that they didn't understand the English-language sign. The boys seemed to think that Tamara and the others were sex workers rather than performance artists.
The cart actually held supplies for cendol, a sweet dessert, consisting of ice with coconut milk, palm sugar syrup, and a variety of toppings: diced jackfruit, green mung beans, and small wormy shapes made of jelly. They just borrowed the cart from a street food vendor for the afternoon, for a small fee. After Tamara parked the cart at Art Jog, some of her friends spied the coconut milk in an unlabeled bottle and thought it was semen. The project was startling in part because even normal sperm banks are outlawed in Indonesia.
Tamara did not actually genetically modify any human sperm. Instead, she used the CRISPR Sperm Bank as a conversation piece to generate dialogue about possible futures for humanity. Among other pressing questions, she wanted to know: If parents have the option to choose the skin color of their children, will the future have a place for brown and black babies?
Notes
- Eben Kirksey, Deakin University, Victoria
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- Book:
- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 265-278
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Dedication
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp v-vi
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16 - He was Busy, Busy. Always doing Research
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 173-181
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Victor Frankenstein was an aristocrat who completed his research in secret, squirreled away in an attic laboratory. When his creature sprang to life, Victor fled—refusing responsibility, unwilling to acknowledge his creation. In June 2019 I visited the key places where Dr. He's research was planned and executed. He was not working alone. Powerful people supported the experiment. Instead of a character who resembled Victor Frankenstein—a mad scientist who furtively completed his research—I found a charming entrepreneur. Just months before my visit, Dr. He had been at the height of his power as he leveraged support from government officials, financial magnates, plus dozens of employees at his start-up company and a team of university laboratory staff. He had been at the cutting edge of China's innovation economy, moving between the worlds of venture capitalism and science.
My ears popped as I rode up an elevator inside Shenzhen's tallest skyscraper, among scores of other glass and steel buildings reaching for the heavens. I was in a new center of power within Asia's economic sector: the Ping An Finance Center. The supertall skyscraper was named after its primary tenant: one of the world's most valuable insurance brands. Time and space collapsed as I gazed below. Shenzhen's twenty-first-century vision of green urban planning—with parklands and forested hills spreading throughout the landscape—was juxtaposed with agrarian landscapes on the outskirts of the megacity. I was inside the fourth-tallest building in the world. Ryan Ferrell, my source inside Dr. He's laboratory, was leading me around Shenzhen, offering crumbs of reliable information on our encrypted chat. Snapping a picture of the ultramodern cityscape, I sent it to Ryan on Signal, letting him know I had arrived.
I was here to meet a friend and confidant of Dr. He. We sat down in a conference room that held a long table, a webcam, and a flat-screen television and exchanged pleasantries. When I’d reached out to set up the interview, I simply said that a friend of a friend suggested we chat. The moment I mentioned Jiankui He's name, the tone of the conversation changed. This young tycoon—at the center of a nexus of financial power—suddenly looked scared and vulnerable. He did not want his name associated with the controversy. It seemed like our encounter was about to come to a hasty conclusion.
11 - Immortality has to be the Goal
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 118-132
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A twenty-eight-year-old man named Tristan Roberts attempted to genetically modify himself in October 2017 while sitting on a living room couch somewhere near downtown Washington, DC. Thousands watched the shaky Facebook Live broadcast in real time. This DIY adventure, Tristan explained, was part of a much larger goal: to disrupt the business model of big biotech companies. Tristan was HIV-positive and gay. He was tired of waiting for profit-driven corporations to deliver a cure. A computer hacker and website developer, he was already skilled at working with highly technical systems. In collaboration with a group of newfound friends, he was now dedicated to a new mission: making gene therapy affordable for everyone.
Tristan was motivated by principles of social and economic justice. “The standard bioethical paradigm pushes risks to marginalized populations,” he explained to me. In recent years, many big pharmaceutical companies had moved some of their riskiest experiments abroad—to places like India or countries in Latin America and Africa that had relaxed laws. If he succeeded in developing a cheap one-time cure for HIV, he planned to offer it for free or at cost to people who did not have reliable access to medicine. Tristan was tired of corporate profiteering at patients’ expense.
Tristan was aware that he enjoyed tremendous privileges. “White men with HIV live as long or even longer than average people in the US population,” he told me. “But marginalized populations do not live as long as white men.” While Tristan was able to access antiretroviral therapy, at least at moments of his life when he enjoyed insurance through his parents or his job, he saw that HIV medicine was beyond the reach of many people in the United States and abroad.
While at Reed College, Tristan worked as an animal caretaker in a laboratory that was studying obesity medications. Witnessing the use and abuse of animals in research made him critical of the mainstream drug development pipeline. So, despite the risks, he decided to experiment on himself. For those who knew him, this move did not come as a surprise. It was part of his broader fight against corruption in the biotechnology marketplace. (A year earlier, days before Trump was elected president, Tristan spray-painted “corrupt” on the wall of FBI national headquarters.)
Contents
- Eben Kirksey, Deakin University, Victoria
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- Book:
- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp vii-ix
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15 - American Medicine and only for You
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 162-172
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A boutique medical center in Shenzhen with a futuristic aesthetic—like The Jets ons, minus the robots—supported Jiankui He's attempt to engineer resistance to HIV in human embryos. The building was white, fading to gray, and topped with a series of pagoda roofs. A fountain was out front along with a plastic red carpet. Automatic glass doors opened into the main lobby where dramatic piano music played, fading into more subtle flute, guitar, and a stringed symphony. The hospital was promoting ideals about beauty, race, consumer choice, and profit-driven medicine that were mixing uneasily with older Chinese values and sensibilities about identity.
The HarMoniCare Hospital in Shenzhen specializes in “American medicine and only for you,” according to their website—offering treatments for infertility as well as obstetrics and cosmetic surgery. The facility has $5.8 million in assets, according to their public disclosures. HarMoniCare is part of the $1.7 billion Hemei Medical network—the largest high-end hospital chain in China that caters specifically to women and children.
A young woman standing at a long curving desk labeled “International Member Center” greeted me with a smile. I asked if I could have a tour of the fertility treatment center. “Of course,” she said. “Wait just a moment and our guide will be with you.” I joined a handful of people who were seated nearby in high-backed leather chairs, brown cushions framed by slick white angular sides. Offthe lobby to the left, there was a long hallway flanked by a glowing case with stuffed animals: a teddy bear, SpongeBob SquarePants, and two Chinese cartoon characters, Yoyo and Cici. A toddler in an oxygen mask and her mother were quietly playing in a waiting room down the hall. At the coffee bar, back in the main lobby, a barista offered Americanos and cappuccinos.
The guide arrived and escorted me toward the elevator. She swiped her pass and we headed up. The hospital had only five floors: traditional Chinese medicine on the ground level, fertility treatments and a maternity ward on the middle floors, and administration at the top. Images of light pink water droplets were on the ceiling of the elevator. Advertisements in Chinese with English headings—HarMoniCare Mom Camp and Dr. Wang's plastic surgery clinic—were on the walls.
13 - High-Quality Children
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 140-148
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Simply Google “BGI NIFTY” and you will find a slick website from China's premier genomics company offering new options in the quest for quality children. This screening technology has already been used in more than sixty-two countries in Asia, Europe, the Americas, and the Middle East. The NIFTY webpage has a “decision calculator” to see if you should mitigate the risks of your pregnancy. An embedded YouTube video offers a perspective from a young white couple. They talk in British accents about the importance of accuracy, saying that they are willing to pay for the best prenatal care on the market. An older single woman says that this will be her first and perhaps only baby, and she wants to make sure that nothing is wrong.
Previously in China, under the controversial one-child policy, couples were encouraged to make the most of their only shot. Amniocentesis was promoted by government experts as part of the practice of yousheng, which can literally be translated as “eugenics” or “high-quality birth.” But many pregnant mothers resisted amniocentesis since the test itself could produce miscarriage. Youshengauthorities actively encouraged mothers to abort embryos with Down syndrome or other “defects,” mirroring advice given to expectant mothers in Europe and the United States. While couples are now allowed to have two children in China, the State Family Planning Commission continues to promote the abortion of “defective” babies through a national campaign aimed at increasing population quality.
NIFTY is a simple blood test that can pick up Down syndrome and an array of other genetic conditions, including relatively rare ones such as cri du chat syndrome and conditions known by obscure numbers like 1p36 deletion syndrome and 16p12.2-p11.2 duplication syndrome. NIFTY does not involve the same risks as amniocentesis. It uses fragments of fetal DNA from the mother's bloodstream, so there is no chance that the procedure itself can cause miscarriage.
BGI, the company that runs the China National GeneBank, is not the only biotech venture that offers prenatal screening through a simple blood test for the mother. A number of other similar products, like Harmony Prenatal Test and Verifi, are also available in the international marketplace.
21 - They are Moving Forward
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 220-229
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Discontent was brewing among the laboratory staffback in Shenzhen. Dr. He was on the road—traveling to Beijing, California, and Hainan to tell trusted supporters about the birth and to plan grand new ventures—while the laboratory staffwere still trying to figure out if the babies would be okay. He was charging ahead at a moment when care and caution should have been taken. The twins remained in hospital incubators, wearing masks to help them breathe, while the laboratory ran tests and crunched numbers. The technicians were still poring over their DNA sequences, trying to see if the babies suffered any genetic damage from the experiment.
The lab had been preparing for a birth in late November or early December. When the delivery came prematurely, everyone had to scramble—readjusting the time they were dedicating to other projects, shifting to new urgent priorities. The genome editing summit in Hong Kong was just weeks away, scheduled to kick offon Monday, November 27, 2018. Pressure was mounting to analyze the data and submit a paper for publication. The staffreasoned that it would take at least ninety days to make sure that the twins were healthy and to prepare the paper. Through a variety of tactics—diplomacy, subtle persuasion, and open confrontation—the laboratory team tried to convince Dr. He to slow down his publication timeline. In spite of their urging, he kept pushing for speed.
As the DNA sequencing data from the twins trickled back into the laboratory, it fell primarily on the shoulders of one person to make sense of the code. A star undergraduate student in Dr. He's bioinformatics course, whom I will call Goran, was hired into the laboratory straight after graduation. The young computer whiz spent long hours hunched over his keyboard in a tiny office on the SUSTech campus he shared with a junior bioinformatics technician and the contact person for patients in the study. His lab mates thought of Goran as wise beyond his years. When Ryan Ferrell joined the team, the young technician slid his computer over so that the pair could share a desk. Goran liked to keep his sideburns long, down past his jawline. He routinely wore earbuds with music playing—even when Dr. He would sit down to have a one-on-one chat.
23 - Bubbles Vanishing into Air
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 233-238
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As the Chinese authorities investigated possible wrongdoing by Dr. Jiankui He, the families who participated in the experiment became swept up in the inquiry. Some Chinese social media influencers blamed the volunteers, saying that they should be burned or even shot to death. One couple who participated in the experiment made a bold rebuttal in a letter addressed to the judge who was overseeing the investigation: “Is the negative impact of these comments even greater than the research itself?” The couple applauded Dr. He for taking a risk while pointing to hypocrisy in Chinese society. In a formal letter to the court, they took aim at the most powerful person in the nation:
President Xi often claims that he cares for the people and their living conditions. Mother Peng [his wife] is the most beautiful representative of the HIV red ribbon. Is this all just a beautiful lie? Today there are people who are not scared of risk, who can put themselves in other people's shoes, and do something for people infected with HIV. Yet, they are being brutally crushed, pushed onto the cold sand beach by the tidal wave of comments, leaving them to die alone. What kind of dream should the China Dream be? Have the promises of harmony, love, and unity burst like bubbles vanishing into air?
The woman who was still pregnant from the experiment—known as P3 in the internal documents—was worried that her baby might be forcibly aborted by the authorities. In a letter addressed to the judge and court staff, she and her husband proclaimed: “Even if the child is disabled or unhealthy, we will take care of and treasure him/her.” The couple insisted that they fully understood the experimental risks and potential dangers before they signed up, saying that they were motivated by “feelings of contributing to science and society.” They wanted to protect the baby from the social stigma of HIV. Drugs can treat diseases like HIV, they argued, but “they can't cure prejudice!”
The expectant parents were not terribly apprehensive about giving birth to another baby who would join the ranks of the world's first genetically modified children. Tragically, however, by participating in this experiment they were exposed to humiliating treatment that overshadowed the disgrace of an HIV infection.
12 - I don't want to Walk. I want to Fly
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 133-139
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Gregor Wolbring, a biochemist who gets around in a wheelchair, is critical of entrepreneurs and scientists who champion gene therapies as miracle cures or as transformative tools of human enhancement. If everyone uses these tools to achieve the same unimaginative dreams—to grow big muscles or have blue eyes—then humanity will be stripped of character and biological diversity. While Wolbring was invited to speak at the 2015 summit in Washington, DC, travel difficulties and teaching responsibilities at the University of Calgary prevented him from attending. Airline baggage handlers often damage his wheelchair, and flight attendants often become uncomfortable when he offers to crawl to his seat. While he does not have a genetic disease, he feels a sense of kinship with other members of the disabled community. “You can understand people like me as part of human variation,” he said, “or you can see us as being impaired and eliminate us from the population.” Wolbring is concerned that CRISPR will be used to edit people like him out of existence.
Writing a short letter to Nature, the top science journal, Wolbring summarized his views: “The disability-rights community has a history of disagreement with experts (including authorities, scientists, and clinicians) over their perception of people with disabilities.” He observed that many doctors see “disability as an abnormality instead of a feature of human diversity.” Assuming that disabled people want to be “normal,” like everyone else, “can lead to flawed ‘solutions’ and disempower those affected.”
When I first spoke with Gregor Wolbring, he insisted, “CRISPR-Cas9 is nothing new.” When geneticists started celebrating this wonderful new tool for molecular biology, he said, “every biochemist was mostly just eye-rolling.” Scientists are only starting to understand how genes fit within complex biochemical interactions in living cells. Before rushing ahead with new tools, biologists should learn from the recent past. Modern chemistry has already produced profound changes to humanity. Mistakes were made that have left a lasting impact on human bodies and the environment. The biologists who are celebrating the power of CRISPR could be dangerous in their naïveté. If new precautionary laws aren't passed, he wonders, will society be able to live with their mistakes?
Prologue : The World On Notice
- Eben Kirksey, Deakin University, Victoria
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- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 1-14
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Surreal artwork in the hotel lobby—a gorilla peeking out of a peeled orange, smoking a cigarette; an astronaut riding a cyborg-giraffe—was the backdrop for bombshell news rocking the world. In November 2018 Hong Kong's Le Méridien 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 world's first “edited” babies. Select experts were gathering in the hotel for the Second International Summit on Human Genome Editing—a meeting that had been called to deliberate about the future of the human species. As CNN deemed the experiment “monstrous,” as heated discussions took place in labs and living rooms around the globe, Dr. He sat uncomfortably on a couch in the lobby.
Jiankui 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. Amidst the bustle of hotel guests, science fiction began to settle into the realm of established fact.
I was checking in to Le Méridien as the story broke, and first heard rumors about He's 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 lag—fresh offplanes from Europe, the United States, and other parts of Asia—we listened to speculation in the hotel's hallways while swimming through reality, caught between waking and dreaming.
Opening the door to my hotel room, a luxury suite courtesy of the US 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.
Epilogue: We have Never Been Human
- Eben Kirksey, Deakin University, Victoria
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- Book:
- The Mutant Project
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- Bristol University Press
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- 18 December 2021
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- 03 March 2021, pp 247-260
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Summary
Donna Haraway lives in a modest one-story house in Santa Cruz, California. Solar panels collect sunlight on the roof and a tangle of eclectic bushes, grasses, flowers, and fruit trees grows out front instead of a lawn. A Honda CRV minivan with an octopus sticker on the back bumper was parked in the driveway. She greeted me at the door with a smile and an infectious laugh. A doe-eyed black dog, Shindychew—named for a fictional planet in an Ursula K. Le Guin novel—was instructed to stop barking and sit. But Shindychew couldn't quite contain her tendency to guard the house as I made my way inside.
Haraway is a child of the 1960s, known for her playful and subversive ideas about science and technology. Over the years, her writing inspired a number of bumper stickers. In the 1980s legions of feminists rallied behind her slogan “I’d rather be a cyborg than a goddess.” More recently she suggested “We have never been human”—riffing on the fact that fungi, bacteria, and other microbes outnumber human cells in the spaces that we call our body. With this new slogan, Haraway was not only describing the past and the present condition of humanity. She was also gesturing toward the future of our species.
In her small and sharply appointed kitchen, an iconic magnet graced the fridge: a Darwin fish—a parody of the Christian Jesus fish—with legs popping out of the bottom, suggesting “We evolved.” I asked about the octopus on her minivan, knowing that she celebrates the “cunning intelligence” of octopuses in her writing. They are “adept at getting out of difficulties,” she said, with “tentacles where proper men would have beards.” Wiggling her fingers with excitement as she talks, it was as if she was extending her own tentacles into the air.
I have known Haraway since 2003, when I enrolled in one of her courses. She later joined my PhD dissertation committee and became my mentor. Over the years I visited her house for department parties and potluck dinners. I was visiting again to report back—to tell her about my research among the world's first edited people—and listen to her ongoing thinking about technological and scientific enterprises that are rapidly changing what it means to be human.
3 - The Best Humans haven't been Produced Yet
- Eben Kirksey, Deakin University, Victoria
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- Book:
- The Mutant Project
- Published by:
- Bristol University Press
- Published online:
- 18 December 2021
- Print publication:
- 03 March 2021, pp 38-51
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Summary
A year before Jiankui He suddenly catapulted to international notoriety, I was on the outskirts of Shenzhen for an international conference at the China National GeneBank. Security guards stood at attention and gave me a smart salute as my taxi passed through the front gate and wound around a steep curved drive. A white building with huge glass windows rose up over a small forested hill in a series of terraces, overlooking a lake. Statues of woolly mammoths flanked the entrance to the building—an adult with huge imposing tusks and small ears, as well as a baby just behind. A flock of pink flamingos was corralled in a pool offto the left . A man in a yellow-and-black uniform waded through a koi pond, tending ornamental plants.
Dr. He was not in attendance. He was on the other side of town, busy at work in his own laboratory. Scores of researchers who shared his basic ambitions, from throughout China and around the world, were milling about, snapping selfies next to scientific rock stars.
Blue and pink lights played on the ceiling as we were ushered into an auditorium for the opening ceremony. Chairman Henry Yang assumed the stage as a dramatic orchestral overture played. He wore a dark business suit and a red tie, and his closely cropped black hair was white around the edges. His conservative dress contrasted with his colorful personality. Yang announced a bold vision: “Within ten years we aim to sequence the DNA of every important plant species, within twenty years we want to sequence every human on the planet, within thirty years we aim to sequence every form of life.”
Yang paraded around the stage, giddy with enthusiasm, saying that he had a surprise in store for the audience. “My girls and boys always have new ideas,” he said. In the next breath he shouted: “George, come on!” A legendary molecular biologist from Harvard, George Church—a towering Cro-Magnon of a man—was summoned to the stage. Church has long aspired to bring woolly mammoths back from the dead. The project was on a back burner in the United States, with technical progress on other projects bringing Church incremental advances. Not so here. In flattering the Harvard biologist, Yang conveyed a strong message: China has the resources and the technical skills to make Church's vision a reality.
10 - Silence = Death
- Eben Kirksey, Deakin University, Victoria
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- Book:
- The Mutant Project
- Published by:
- Bristol University Press
- Published online:
- 18 December 2021
- Print publication:
- 03 March 2021, pp 103-117
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Summary
As a veteran of ACT UP—the AIDS Coalition to Unleash Power—Matt Sharp has long been fighting inequality in science and medicine. While Jay Johnson was working toward the same goals—carefully, quietly, behind the scenes—Sharp was out in the streets. Sharp was among those arrested at the National Institutes of Health in May 1990 during an unruly protest with rainbow-colored smoke bombs and signs with powerful messages: “Clinical Trials Now,” “Silence = Death,” “Red Tape Kills Us,” and “One AIDS Death Every 12 Minutes.” When he signed up to join a genetic engineering experiment in June 2010, he did not know that he would soon be reliving battles from decades ago. after Sangamo Therapeutics altered his DNA, Sharp became entangled in a high-stakes struggle over the future of gene editing.
The pitch to join the experiment came one day over lunch in San Francisco, from Jay Lalezari, a trusted doctor who had become a friend. Gene editing was very risky, and only a single safety study had been conducted in humans—the trial at Penn Medicine in Philadelphia. Lalezari explained that the risks probably did not outweigh the benefits. Sharp, a white guy who was fifty-three at the time, had already put his body on the line for more than twelve clinical trials. “They gave me this opportunity,” he said. “ ‘Do you want to be the first person in this safety trial?’ I said nooooo. But I said that I’d be number two. This is a true story. I knew my number, 102.” (The first patient in the trial, number 101, did not wish to discuss the experiment. His medical record is protected by patient privacy laws.)
Before the study officially began, Sharp made repeated visits to Lalezari's clinic—Quest Clinical Research—so they could monitor his baseline health and collect his signature on reams of paperwork. During the informed consent process, a step required by US law for every human experiment, Quest staffdiscussed the medical and social risks with Sharp. If he agreed to have his DNA altered, he risked living with social stigma.