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From Chance to Choice: Genetics and Justice

From Chance to Choice: Genetics and Justice
By Allen Buchanan, Dan W. Brock, Norman Daniels, Daniel Wikler

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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.


Product Details

  • Amazon Sales Rank: #421959 in Books
  • Published on: 2001-11-12
  • Original language: English
  • Number of items: 1
  • Binding: Paperback
  • 412 pages

Editorial Reviews

From Library Journal
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.

From The New England Journal of Medicine
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.

Review
"...an engaging and provocative read." Canadian Bulletin of Medical History

"From Chance to Choice provides a much needed discussion of the fundamental ethical and social issues raised by the application of the new genetics to human beings...a style that combines complex analysis with great readability." Helga Kuhse, Bioethics

"From Chance to Choice: Genetics and Justice is a very admirable book, much deserving of the praise that is has already received... this is a very succesful volume. The authors have managed to raise an enormous range of issues related to genetic justice with great clarity. Further, they have succeeded in providing the reader with the conceptual tools necessary to begin to address these questions more fruitfully." Medical Humanities Review

"Amazingly, the authors approach this millenial 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." New England Journal of Medicine

"In a book which is notable both for the breadth of the questions posed and the depth of the potential responses, these four distinguished moral and political philosophers provide a much needed and well reasoned ethical compass for future journeys into genetics and genomics." Francis S. Collins, Director, National Human Genome Research Institute, National Institutes for Health, Washington, D.C.

"...the book is an excellent analysis of how to approach the ethical dilemmas raised by biotechnology, particularly concerning distributive justice, from the standpoint of liberal theory. This is a big achievement. Buchanan, Brock, Daniels, and Wikler are on to something big." Boston Book Review

"Buchanan, Brock, Daniels, and Wikler--all philosophers, each with different subspecialities in ethics and bioethics--have written a comprehensive, careful, focused, and usefully opinionated book in which they speak in a surprisingly univocal fashion.... the book's nuanced analyses and detailed arguments...are rewarding to work through." The Philosophical Review

"The field of bioethics needs more books like this one." Ethics


Customer Reviews

Interpreting Chance to Choice for the Average Joe?5
I would like to suggest that this book is a landmark in the intellectual history of the human race on a par with Rousseau's Social Contract and Darwin's Origin of the Species. This book is a great achievement for the authors (a "dream team" of practicing bioethicists). I had just enough training in ethics (B.A. Michigan 1982) to understand the book and I enjoyed it immensely.

I wonder, however, whether this book would probably be inaccessible to many readers who should read it. I expect we will need a really thorough set of "Cliff Notes" (or "Genomic Ethics for Dummies"), since this book seems designed to be read by the modern ethical philosopher, moreso than the educated members of the public. Perhaps the reviewers on Amazon.com could provide such a service for the world. I was fortunate to have an advance peek at the book through a conference held in San Diego in January, so I have had some time to reflect on the book's implications.

This book made me intrigued about the prospect for some people using the genome to have better babies (see the book on Designer Babies by Dr. Gosden for the "how to" on in vitro fertilization). Under secular ethical principles, as outlined in this book, do parents have an ethical obligation to use genomic information to have a "healthier" child? If so, what are the ethical boundaries of that obligation? NPR had a report some time ago about some achondroplastic dwarf parents who wanted to choose a child with their genetic "defect" --- is that sometime ethically prohibited by the principles in this book? The parental choice issues raised by this book strike me as the issue ripe for controversy. These are the fundamental questions that this book raises for every member of the human race who plans to procreate (or already has procreated).

My kids will be entering the first generation where prospects for improving admission to the aristocracy (e.g. to an Ivy League school) arguably could begin at the moment of conception (if in vitro, aided by genomic data to screen embryoes). I find that interesting and a little bit alarming.

Chance to Choice also addresses myriad ethical issues (those relating to "distributive justice" in the mode of John Rawls' Theory of Justice) that will spin off from the genome project. They suggest that genetic discrimination (the "genetic ghetto") may arise if we are not careful about how this information is used.

For anyone planning to make a living from the genome, some understanding of this book is essential to their success in business (I am an attorney involved in biotech issues and I think that this book point to (but does not map out) the boundaries of what companies can do with the genome).

My EMail is tredick@chapinlaw.com if anyone interested in discussing this book's implications further. I think that people will be talking about this one until the talking, bipedal genetically enhanced, vegetarian activist cows come home sometime in the next hundred years (just kidding... ;).

I plan to buy some extra copies on Amazon.com to give away or mark up with highlighters (those parts I need to read many times to really understand). It really is a great and timely book.

Tom

Ethics, Eugenics and the human genome5
This book addresses all of the neccessary details of the social ramafications involved with our knowledge of the human genome. In this book, the heart wrenching accounts of America's eugenic movement are powerful enough to move anyone to become actively involved in the issues at hand. A real eye opener, one which makes it painstakingly clear that we are not prepared to deal with the information that we have aquired about ourselves and eachother.

An excellent account of how eugenics has gone from being seen as an evil to being acceptable4
This book is dense and intellectually rigorous. It allows the reader to understand the history of eugenics - how the concept has been shaped and used by many different people and many different agendas over the last two hundred years. My only concern is that it lacks an understanding of the implications of genetic screening and enhancement in the real lived world - that while it may argue there a few ethical and "justice" hurdles in the way of using the knowledge gained from the study of genetics - it does not account for how such changes would impact the lives of real people. It is worth reading however because it demonstrates how easily we have come to accept the ideas put forward by geneticists as to the benefits of genetic screening and illustrates the assumptions many geneticists make about the lives of people disability. That is that many (not all) but many are better off not lived. And that the emphasis should be on prevention rather than cure.