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An anthropologist investigates the factors shaping modern genetic medicine

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

Eben Kirksey
St. Marten's Press
304 pp.
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When the first gene-edited babies, Lulu and Nana, were born in China in October 2018, He Jian­kui was at the hospital. The scientist behind the secretive trial had flown in from Shenzhen with some of his team members as soon as he had heard that the babies’ mother was in labor. Apart from wanting to collect samples for genetic testing, he was also hoping to be able to hold the twins for a promotional photo opportunity. The right to do so—and the right to use the photos on billboards, cars, and calendars—was written into the consent form that the parents were required to sign before they could join the trial. He and his team were able to collect most of the samples they were after, but he was not allowed to hold the babies. Contrary to He’s later claim that the twins were born “as healthy as any other babies,” they were in neonatal intensive care after their premature birth.

This scene captures but a few of the many intimate details about the first clinical use of heritable human genome editing (HHGE) that are described in The Mutant Project, the third monograph by cultural anthropologist Eben Kirksey. Apart from offering new insights into the events surrounding the birth of Lulu and Nana, Kirksey also provides firsthand accounts from parents who took part in He’s trial; reproduces conversations between members of He’s laboratory as they tried to navigate the trial and their boss’s ambitions; and details how He traveled across China and beyond to meet investors, academic advisers, and Chinese government officials to drum up support for his trial and other entrepreneurial endeavors connected to it.

The Mutant Project provides readers with an intriguing picture of the events, ambitions, and deceptions that led up to the twins’ birth, but these insights are only part of what makes it such a fascinating read. At its core, the book is a complex analysis of the global culture in which the project of HHGE is now developing.

Kirksey begins his story in November 2018 at the Second International Summit on Human Genome Editing in Hong Kong, where news of the twins’ birth first broke. Readers follow the author, who was scheduled to speak at the conference on a panel on research ethics, as he first hears the news and tries to gather more information. From here, the story expands across both time and space.

Kirksey recounts details from the First International Summit on Human Gene Editing in 2015, where Western leaders of gene-editing technology mixed and mingled with government officials and corporate lobbyists. He travels to Philadelphia and the San Francisco Bay Area, where he meets patient-activists who took part in early gene-editing trials and fight for equal access to new medical treatments. He travels to Indonesia, where he introduces readers to a transgender artist who explores possible genetic futures and interrogates questions of race and beauty. And he delves into the realm of do-it-yourself (DIY) biologists, who try to harness the power of new gene-editing technologies to modify themselves and others.

Out of this rich tapestry of stories, some central themes emerge, including the question of how profit-driven medicine and dreams of personal and national glory shape the complex landscape of modern genetic medicine. Kirksey shows how these are global phenomena that unfold their power in the West and the East, in mainstream academia, and at the fringes of DIY biology. He is also concerned about how cultural ideas about race, beauty, and health become intertwined with new genetic technologies and with the global financial network. These issues raise important questions about how we deal with stigma and inequality and about who benefits from new genetic treatments and at what cost.

Kirksey does not attempt to answer all of these questions, so those looking for a neat set of solutions might be disappointed. But they will also be missing a key point of this book. The author describes The Mutant Project as a “mosaic portrait,” but it is more than this. It also traces the ever-
shifting nature of the moral and ethical lines surrounding new genetic possibilities. Kirksey’s analysis reminds us that the lines we draw are always in flux. In doing so, it forces us to slow down and think deeply about what questions we ask—and how we answer them—when seeking to determine what is acceptable when it comes to genome editing.

About the author

The reviewer is at the London School of Economics, London WC2A 2AE, UK.