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A new book offers an introduction to the ethical dimensions of germline gene editing

Altered Inheritance: CRISPR and the Ethics of Human Genome Editing

Françoise Baylis
Harvard University Press
2019
297 pp.
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With Altered Inheritance, bioethicist Françoise Baylis has authored a vivid call to action that “aims to bridge the divides between theory, science, politics, and practice” in response to increased public awareness and scientific applications of CRISPR/Cas9 technology. She achieves her aim in this timely and important book.

Baylis calls for broad societal consensus and shared responsibility to guide heritable gene editing toward the common good, which she defines as that which is essential for survival and well-being, to which the market, property, and liberty are subordinate. Her call demands an urgent response, as she notes that humanity sits precipitously on the verge of either a new beginning or the beginning of the end.

A prologue and epilogue bookend the 10 chapters that comprise Altered Inheritance. The back matter includes an index to make the material accessible for scientifically curious general readers, scientists interested in the ethical dimensions of gene editing, and bioethicists seeking an innovative framework to direct theorizing and practice in the era of CRISPR.

Baylis seamlessly threads definitional and conceptual content into the first three chapters, which include critical information for readers who do not have a strong background in the terms and technology of gene editing. The first chapter analyzes Huntington’s disease as a case study for targeting a single gene. Chapter two distinguishes somatic from germline editing—the former being an edit that affects an individual, the latter being one that will be passed on to the individual’s descendants. Heritable gene editing is the main focus of the book.

In chapter three, Baylis constructs a brief history of gene editing, using the case of “designer babies” as a central example. (Incidentally, the term “designer baby” was first coined to capture marketing-influenced, brand-heavy consumer behavior and only later came to be applied to gene editing.) She concludes this chapter with an expert philosophical discussion that shows that the demarcation between health-related editing and non–health-related editing is not as clear as our intuitions may lead us to believe. Cognitive enhancement through traditional means, including reading and education, may only be a difference of degree, not of kind, from gene editing that selects for particular cognitive traits.

Baylis continues this important discussion into chapter four, in which she argues that all medical treatments are a form of enhancement—improving or returning an aberrant gene to its “normal” status. However, not all enhancements, she argues, are treatments. If one accepts this premise, the pertinent ethical question is not whether treatments should be allowed and nonmedical enhancements prohibited but whether heritable gene editing of any stripe may be structured to promote equality, access, and fairness.

In chapter six, Baylis continues her discussion of the possible harms and benefits of germline editing through the lens of potential moral wrongs. She worries, for example, about the opportunity costs that could occur when science and technology funding is diverted toward gene editing research, the benefits of which may then only be accessible to those with economic means. Baylis encourages the public and scientists alike to ask first, how gene editing science will improve the human condition, and second, what kind of world they want to live in.

Baylis introduces the idea of “impact ethics” in chapter nine. Following a heuristic articulated in feminist ethics, in which one sets aside a traditional notion of individual autonomy, impact ethics advances a relational understanding of autonomy, viewing people as interdependent. Here, Baylis also resists the notion that experts have privileged access to the truth.

“Decisions about the use of genetic technology are too important to be left to scientists,” writes Baylis in chapter 10. This provocative claim is not intended as a negative account of scientists’ involvement in the gene editing debate nor as a prohibition on their ongoing work. Rather, it is meant as a call for bidirectional engagement between scientists and the public. Public empowerment in these integral policy discussions is something “all of us” may and should participate in.

Commitments to justice, responsibility, accountability, and consensus-building are features of a socially just science and bioethics. Toward this end, Altered Inheritance is a foundational tool in the path ahead.

About the author

The reviewer is a philosopher of science and freelance writer based in Indianapolis, IN, USA.