From Chance to Choice: Genetics & Justice

Written by four internationally renowned bioethicists, From Chance to Choice is the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late 19th and early 20th centuries. In addition, appendices explain the nature of genetic causation, gene-environment interaction, and expose widespread misconceptions of genetic determinism, as well as outlining the nature of the ethical analysis used in the book. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science.

Just when President Clinton has joined other world leaders to announce the completion of the first draft of the human genome, four philosophers have stepped forward to perform an "ethical autopsy" of eugenics, in which they explore the implications of eugenic theory for new genetic interventions. As its title suggests, From Chance to Choice: Genetics and Justice is a benchmark treatise. It is captivatingly succinct and complex, and its authors grasp the fundamental issues of justice, fairness, and equality that exist in eugenics, just beneath the glitzy research and "big science" used to map the human genome. As the authors note with remarkable harmony, the events surrounding the Human Genome Project provide outstanding reasons for rethinking modern moral and social philosophy. The authors, all professors of philosophy at distinguished universities, provide for the world a succinct and concise statement of the questions that will confront society as genetic techniques and interventions become commonplace in the years ahead.

In their groundbreaking attempt to apply their collective wisdom to these issues, the authors engage in a critical analysis of eugenics, which they accurately characterize as the first attempt to use scientific knowledge about heredity to improve human lives. Although they criticize eugenics as shoddy science, rife with blatant class-based and racial bias, they also courageously describe the eugenic underpinnings of the relation between future genetic interventions and justice. Acknowledging, without endorsing, the inescapable influence of eugenic philosophies on applied genetics, the authors meticulously catalogue complex but inevitable issues of justice, fairness, and equality that will arise in the 21st century.

What does it mean when society views a trait as desirable? Does that make the trait good? Which traits trump others? Does medicine look only for disease, or does it also look for desirable traits? If so, which desirable traits are more important than others?

The authors set forth some fundamental working assumptions: no one knows the limits of genetic knowledge, and ethics should guide social practice. However, there is no clearly superior framework to guide ethical practice concerning genetic interventions and other applications of knowledge from the Human Genome Project in the decades ahead. The authors clearly state that the theoretical antecedent for current research, eugenic theory, foundered because it confused the prevention of disease with the prevention of lives that might have meant disease. This resulted in laws and social policies that favored the sterilization (or, in the notorious Nazi applications of eugenics, death) of so-called undesirable populations, laws that were rooted in faulty judgments about what kinds of people should be born. The authors also correctly note that eugenicists confused bourgeois values with biology in a manner that was not founded in scientific fact but that instead, perhaps inadvertently, validated the self-image of the upper classes.

Criticizing Rawls and Dworkin to express their own view on whether fairness is a question of distribution, a fundamental value, or a social goal, the authors describe the goal of "equal opportunity" as an avenue toward entitlement and toward limitation of access to genetic interventions and services. From the authors' collective standpoint, issues of justice are a distribution problem, with some benefits available to each person and, inevitably, not all benefits constantly or simultaneously available to everyone. The authors hint at the potential impact of this problem, stating that genetic therapies and other choices will confront us and that "we will be tempted to medicalize what we have hitherto considered normal." The line between health and disease will be redrawn by society.

Yet, rather than explore the influence of precursors of contemporary philosophical norms and social values, the authors limit their discussion of genetic justice to distribution and economics. They acknowledge, but do not fully grapple with, the questions of social value that confound any discussion of the distributive view of justice and thus hint at a societal influence, asking whether the desirability of a treatment makes it necessary (as in the case of psychiatric counseling for the spouse of a person who has a mental illness, in order to save the marriage), but their analysis does not go far enough. It would have been particularly useful if they had offered more discussion of underlying social values as a distributor of equal opportunity and justice. Such an analysis would have been invaluable for understanding the examples they provide from contemporary medical care and for future practice.

Amazingly, the authors approach this millennial philosophical issue without losing humanity. Their collective style of writing is a joy to read, and their work reads more like poetry than philosophy. Like poetry, too, their words are worth returning to several times, to unearth intentionally embedded subtext with enhanced meaning. Their book will be cited often.

Ilise Feitshans, J.D., Sc.M.
Copyright © 2000 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

There has been some reluctance in this country, based on the horrific consequences of past eugenics movements, to consider fully the societal impact of recent and future genetic investigations. The authors (professors of philosophy and medical ethics) attempt to develop a moral framework for the theoretical issues relating to genetic interventions. The book aptly illustrates the complexities of these concerns, exploring current ethical theories to determine if they can adequately address these tough issues. Equal opportunity, distributive justice, inclusion, and reproductive freedom are discussed in depth in an analysis of how these concepts relate to genetic technologies. While the authors freely admit that they do not have all the answers, they do conclude with some broad recommendations, particularly regarding the role of the state in genetic policymaking. Prior knowledge of philosophical theories will be helpful for readers of this scholarly work. Recommended for upper-level and graduate research collections.
-Tina Neville, Univ. of South Florida at St. Petersburg Lib.
Copyright 2000 Reed Business Information, Inc.