The mutant project Inside the global race to genetically modify humans

Eben Kirksey, 1976-

Book - 2020

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

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Subjects
Published
New York, NY : St. Martin's Press 2020.
Language
English
Main Author
Eben Kirksey, 1976- (author)
Edition
First edition
Physical Description
292 pages ; 25 cm
Bibliography
Includes bibliographical references and index.
ISBN
9781250265357
  • The Mutant Timeline
  • Prologue: The World on Notice
  • 1. I'm Quite Glad that I Wasn't First
  • 2. The China Dream
  • 3. The Best Humans Haven't Been Produced Yet
  • 4. Winner Takes All
  • 5. Look at Those Muscles, Look at that Butt
  • 6. A Moral Choice
  • 7. Will I Have to Mortgage My House?
  • 8. The Cancer Moonshot
  • 9. Free Health Care for All
  • 10. Silence = Death
  • 11. Immortality has to be the Goal
  • 12. I Don't Want to Walk. I Want to Fly
  • 13. High-Quality Children
  • 14. #Transracial
  • 15. American Medicine and Only For You
  • 16. He Was Busy. Busy. Always Doing Research
  • 17. A Hammer. Looking for a Nail
  • 18. Beautiful Lies
  • 19. Two Healthy Baby Girls?
  • 20. Mixed Wisdom
  • 21. They Are Moving Forward
  • 22. Chinese Scientists are Creating Crisp R Babies
  • 23. Bubbles Vanishing into Air
  • 24. The Horse has Already Bolted
  • Epilogue: We Have Never Been Human
  • Acknowledgments
  • Notes
  • Index
Review by Booklist Review

A Chinese scientist created the first genetically modified babies in 2018. Employing CRISPR technology (a method of editing DNA), his experiment aimed to generate genetic resistance to HIV. Kirksey, a cultural anthropologist, investigates the distressing story of this rogue researcher and contemplates the alarming risks and potential rewards of genetically engineering human beings. Profound questions and serious concerns surround gene-editing of humans. Should the technology be reserved for addressing disease and correcting serious physical abnormalities? Or is human enhancement (bigger muscles, extra height) fair game too? And what about the prospects of genetic discrimination by potential employers and insurance companies? Who decides what is abnormal, and what forms of human augmentation (super soldiers) is considered reasonable? Kirksey tackles many of these complex issues, including ethics, social justice,inequality, threats of eugenics, and the influence of money on science. Aldous Huxley's Brave New World (1932) depicted a frightening dystopia dependent on the social engineering of human embryos. The 1997 film Gattaca portrayed a genetically driven world of designer babies and social inequality. Science fiction is increasingly becoming science reality. Be concerned.

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review

Anthropology professor Kirksey (Emergent Ecologies) explores the social impact gene editing in this unfortunately lackluster treatise. He begins with controversial Chinese scientist Jiankui He, who, in 2018, used CRISPR technology to alter two human embryos' DNA, and then looks into the field's ethical questions. These include it being too expensive for more than a small global elite to access, and the prospect of genetic traits being eliminated from embryos for spurious as well as valid reasons. To illustrate these concerns, Kirksey introduces intriguing characters, including a DIYer who tried to cure himself of HIV and "disrupt the business model of big biotech companies" he sees as contributing to gene therapy's high costs, and an Indonesian artist who created a CRISPR-inspired art installation to investigate the uncertain "place for brown and Black babies" in a color-conscious world where fetus skin color could be changed at will. However, Kirksey's discussions of the affordability problem yield no convincing solutions, and he has a habit of repeatedly refers to one person or another as a "white guy," striking an odd note. Those looking for an in-depth analysis of the possibilities and dilemmas of gene editing will be disappointed. (Oct.)

(c) Copyright PWxyz, LLC. All rights reserved
Review by Library Journal Review

Cultural anthropologist Kirksey (Deakin Univ., Melbourne; Emergent Ecologies) immersed himself in the world of genetic medicine to report on the status of human genetic engineering, from custom-made gene therapies for cancer and HIV patients to gene editing in reproductive medicine. But the centerpiece of Kirskey's story is the secret experiment of Chinese scientist Jiankui He, who used the gene editing tool CRISPR to modify a gene in human embryos to be HIV resistant and, disregarding ethical and legal issues, transplanted the embryos back into the mother. Kirksey traces Jiankui He's spectacular rise to superstar scientist and his equally spectacular fall owing to the negative reaction following the announcement that his CRISPR-modified embryos resulted in the birth of twin girls. Despite the scientific community's condemnation of Jiankui He's experiment, the author believes that human gene experimentation will continue to race forward without adequate ground rules or oversight, in China and elsewhere. VERDICT A fascinating albeit chilling account of how human embryo engineering moved from the realm of sf to scientific fact. Recommended for anyone interested in the brave new world of genetic engineering technologies.--Cynthia Lee Knight, formerly with Hunterdon Cty. Lib., Flemington, NJ

(c) Copyright Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Review by Kirkus Book Review

Lucid study of recent efforts to alter the human gene to end hereditary diseases, a project fraught with ethical and medical implications. Kirksey, an anthropologist who is often called upon to speak to humanistic, rather than strictly biological, views of human nature, explores a most human problem: the use of the new CRISPR technology to alter genes to remove undesirable features. "CRISPR is an enzyme that produces targeted mutagenesis," he writes. "In other words, CRISPR generates mutants." These mutants are not yet at the level of the famed X-Men, though they touch on a point in common. As Kirksey observes, the X-Men series "was created by two American Jewish men in 1963 as a parable about civil rights." And what of the civil rights of the gene-edited babies produced recently in a Chinese laboratory? They have been carefully hidden away, for "the families desperately wanted to protect the identity of their children to prevent discriminatory treatment by society." Kirksey's primary narrative follows Jiankui He, the Chinese scientist responsible for the in vitro gene-edited procedure that produced a set of twins. Dr. He, a brilliant man who raised himself out of poverty through sheer effort, may have started with the best of intentions, but the gene-editing enterprise quickly became a profit center snapped up by excited corporations. Editing, writes the author, may not be the best metaphor: "CRISPR is more like a tiny Reaper drone that can produce targeted damage to DNA," sometimes hitting precisely and sometimes inadvertently destroying good cells on either side. Whatever the case, scientists are already looking at eliminating existing mutations, "from primordial dwarfism to obscure conditions like CAMRQ (cerebellar ataxia, intellectual disability, and dysequilibrium syndrome)," a business without visible end and, of course, available first to those with the greatest financial resources. A readable, provocative look at biological tinkering that will doubtless shape the future, whether we like it or not. Copyright (c) Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.