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Reviewed by:
  • Altered Inheritance: CRISPR and the Ethics of Human Genome Editing
  • Carolyn P. Neuhaus, PhD
Review of Altered Inheritance: CRISPR and the Ethics of Human Genome Editing

What kind of world do we want to live in? It’s rare that we ask this question of ourselves, and even rarer that we get to do so with others. In Altered Inheritance: CRISPR and the Ethics of Human Genome Editing, Francoise Baylis encourages us to keep this question in the forefront of our minds as we think about whether, when, or how to edit the human genome. She is neither an “enthusiastic proponent nor a staunch opponent” (65) of heritable human genome editing. She is, however, very clear that the ethics of human genome editing is not the domain of scientists, ethicists, or elites. Her thesis is that all of us must think together about what our collective future should look like, and then consider whether and how human genome editing fits into that future. While she persuasively defends this thesis, however, Baylis is short on the details of how we achieve it, and at some points, her close analysis of discrete events could distract readers from the expansive, collective thinking she prescribes.

The book’s main argument defends broad societal consensus about human genome editing, that is, creating “a process that involves seeding global dialogue, engaging in a respectful exchange of divergent views and values, building trust, and exploiting collective intelligence on how best to use science and technology to create a better world” (8). Baylis argues that this process must involve people beyond science, medicine, government, private corporations, and other elite institutions. Baylis describes what’s at stake in both somatic and heritable human genome editing—both for individuals and society. Much of what she reviews in the chapters 1–5 will be familiar territory for bioethicists. These chapters make the case that the complexity of the ethical issues and high stakes merit broad societal consensus on human genome editing. The argument gains steam in the second half, as Baylis details milestones in the science, oversight, and governance of heritable human genome editing. Special attention is paid to the 2015 and 2018 International Summits on Human Gene Editing—and their failing to be inclusive or even to abide by their own recommendations. The 2015 International Summit Statement, penned by the Organizing Committee, called for broad societal consensus ahead of [End Page e-27] continued research on heritable human genome editing. The 2018 Summit Statement however, affirmed the permissibility of research on heritable human genome editing as it outlined a translational pathway for its development and use. Almost no effort to achieve broad societal consensus occurred in the meantime. Roughly the second half of the book analyzes what happened during those intervening years, from recruiting women to donate eggs to research that would involve editing embryos to debates over the use of the word ‘moratorium’ among American scientific leaders.

Baylis is no stranger to this topic. She’s been writing on it for decades. I was surprised to learn that Altered Inheritance is her first single-authored manuscript. (Baylis edited or co-authored some 18 other books. Her CV extends fifty-some pages.) Some of the book’s ideas and arguments have been developed elsewhere yet Baylis brings them together in a novel and engaging way.

The biggest strength of this book is Baylis herself. Given her prominence in the field and dedication to practicing “Impact Ethics,” Baylis has not only had access to but also actively participated in institutional, national, and international discussions of the ethics of heritable human genome editing at the highest levels, including among International Summit organizers. She’s a trustworthy navigator of what has happened in the science, ethics, and governance space since CRISPR was discovered. Her argument for broad societal consensus is bolstered by the close account she provides of scientific leaders and other elite academics and institutions making pronouncements about the future of human genome editing without meaningful input from non-scientists, much less the marginalized voices among them.

To this point, in Chapter 7, Baylis accuses science of “disparaging” ethics (145). I want to offer a different interpretation: Science has “chosen...

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