Françoise Baylis, Altered Inheritance: CRISPR and the Ethics of Human Genome Editing, Harvard University Press, 2019
Carolyn P. Neuhaus
The Hastings Center
Garrison, NY
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, Françoise 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 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” the ethic to guide the future of human genome editing. Far from disparaging the work of philosophers and bioethicists, certain ethicists’ work has been too readily embraced. Embracing the work of people like John Harris, Julian Savulescu, and others who defend heritable human genome editing, some scientists’ failing is not so much their ignorance or disparagement of ethics, but overconfidence. They seem to believe that their chosen way of thinking about and seeing the world and humans’ place in it is the only one that ought to guide scientific inquiry and technological development. This interpretation of the scientists and Committee members at the center of Baylis’s story implies that debates over human germline editing are political in nature, not only ethical. While Baylis takes scientists’ “disparagement” of ethics as illustrating a need for sound ethical analysis, this could also be analyzed through a political lens. Who has—and ought to have—the power to direct scientific inquiry and technological progress? Who has—and ought to have—the power to set values that should guide us in that endeavor? Baylis’s emphasis on public empowerment, over and above public engagement, acknowledges the political nature of the debate over human germline editing. Questions about what kind of world we want to live in are indeed ethical questions—ones we ask both of ourselves and with each other. Questions about how “we” should negotiate our different answers and nonetheless flourish and live together peacefully move us into the political realm.
To her credit, Baylis enters that realm. The last chapter of Altered Inheritance presents Baylis’s vision for inclusive democratic governance of heritable human genome editing: “global citizens from all walks of life are afforded an opportunity to meaningfully contribute to discussion, debate, and decision-making” (193). She describes three democratic forums that could be used to engage and hopefully empower publics: democratic deliberation, collective discernment, and decision-making by consensus. She also notes efforts to create inclusive international guidance and governance mechanisms. Baylis does not describe how the democratic forums she describes might feed into the larger international projects.
This chapter will leave many unsatisfied. For example, those who study and practice democratic deliberation will note that her framing of the goal of deliberation is too narrow. Democratic deliberation need not reach an actionable decision. Its value to policymakers or others is sometimes in exploring nuanced views of participants and understanding their perspectives on a particular topic, even when there is no expectation of a decision or a resolution. Additionally, some of the problems that Baylis notes pertaining to the role of experts in democratic deliberations can be allayed through the design of the forum. Facilitators need not be scientific experts. These are small things compared to the real let-down: Baylis does not move from describing these forums to outlining how and where they might occur. Democratic forums like those she describes can produce extremely valuable information, but who is paying attention? Who should fund these forums? Will the results feed into policymaking in a way that empowers publics, or will they be ignored? What new institutional or political structures at the local, national, and international levels can make this vision a reality? These questions need answers if we are to achieve Baylis’s vision.
The book’s stated aim is to “improve the ethics literacy and science literacy of those who are keen to reflect on the ethics and governance of deliberately altering the genomes of our descendants” (8). Baylis writes, “the intended audience is the human family—‘all of us’” (8)—presumably those who would participate in the kinds of democratic forums and discussions Baylis prescribes. A good chunk of the book, however, is concerned with the ways in which those with control over the future of heritable human germline editing, i.e. members of the International Summits’ Organizing Committees, have failed to check their power over the last six years or so. They’ve shifted terms of the debate, made empty promises to engage publics, and arguably abdicated responsibility when their recommendations and actions were misinterpreted by He Jiankui, the Chinese scientist who used CRISPR to produce gene-edited babies in 2018. This accounting is important, especially for those thinking about and working on the governance of heritable human genome editing. I found it fascinating, at some points reading like an “insider’s perspective” on events that I had witnessed from the outside. However, Baylis’s account of this history does not obviously improve the ethics literacy of those who are keen to join the conversation about our collective future or whether we should edit the human germline. I found the detailed account of how specific individuals on the Organizing Committees understand the word “moratorium” to be particularly distracting from this overarching goal. Ditto for the extensive analysis of informed consent documents used in Shoukhrat Mitalipov’s study at Oregon Health and Science University’s study that involved editing human embryos. Baylis found serious flaws and ethical failings in the informed consent documents and process to procure eggs from female donors in that study.
To be clear, calling for moratoria (or not) and the adequacy of informed consent processes are extremely important topics of analysis and discussion. I found them insightful, and these parts of Altered Inheritance should be of interest to people who are serious about the oversight and governance of this research. But that is not “all of us” in the human family. It’s a very particular subset. So, while I think the book succeeds at shedding light on the tensions, intricacies, and power dynamics of the oversight and governance of human genome editing to date, I am less convinced that Baylis met the goal she set out for herself: Namely, to write a book of broad interest to those who want to understand how heritable human genome editing fits, or doesn’t, in our collective future. I recommend this book to colleagues who want to think seriously about the governance of heritable human gene editing, to get a sense of how many layers of oversight and governance there are (committee, institutional, national, international) and how things can go better and worse at each.
As I was finishing up this review, the World Health Organization (WHO) released its Recommendations on Human Genome Editing, along with a Framework for Governance of the technology. Baylis was a member of the Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing that led the process of writing these Reports. Her insights and impact can be found throughout the comprehensive report, such as the inclusion of empowerment of publics alongside public education and engagement as an important goal. Furthermore, the Expert Advisory Committee consulted with people from around the globe representing a variety of different sectors, organizations, and perspectives as they prepared their Report. It’s not quite a robustly democratic process with direct input from ordinary people, but this effort nonetheless made good on the commitment to inclusivity and listening to marginalized voices. It’s progress, and I, for one, am grateful to Baylis for steering all of us in this direction.
Carolyn P. Neuhaus
The Hastings Center
Garrison, NY
Acknowledgement: Carolyn receives funding from the National Science Foundation to study broad public deliberation about the use of genome editing to modify organisms in the wild (Award Number: 182793).