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Access to the Genome
The Challenge to Equality
Maxwell J. Mehlman and Jeffrey R. Botkin
Georgetown University Press, 1998

Completion of the Human Genome Project will make possible a staggering array of new medical technologies, including new diagnostic and screening tests for inherited disorders, gene therapies, and the ability to manipulate a person's inherited, non-disease traits. Most of the attention given to the social implications of these technologies has focused on their potential to harm the individual, for example, by denying employment or insurance.

This book explores instead the potential harm to society if we unfairly distribute the enormous benefits of genetic technologies. The resulting division of society into genetic haves and have-nots would undermine the basic foundation of Western democratic society—the belief in equality of opportunity.

This book explains, in terms that can be understood by the general reader, how DNA works, what the Human Genome Project is, what these genetic technologies are and what they promise, and how they could disrupt our democratic society.

In an original contribution to the literature, the book then discusses the alternatives for avoiding the creation of a genetic underclass, ranging from halting the Human Genome Project itself to making genetic technologies available without regard to ability to pay. The authors' provocative conclusion is that a lottery in which everyone has a chance to obtain access to these technologies is the only feasible option.

This book will be of interest to anyone who wishes to learn more about the Human Genome Project and the genetic revolution that it will create, as well as those who already are familiar with the project and are concerned about the social consequences of its scientific developments.

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Brutes or Angels
Human Possibility in the Age of Biotechnology
James T. Bradley
University of Alabama Press, 2013
A guide to the rapidly progressing Age of Biotechnology, Brutes or Angels provides basic information on a wide array of new technologies in the life sciences, along with the ethical issues raised by each

With stem cell research, Dolly the cloned sheep, in vitro fertilization, age retardation, and pharmaceutical mind enhancement, humankind is now faced with decisions that it has never before had to consider. The thoughtfulness, or lack of it, that we bring to those decisions will largely determine the future character of the living world.
 
Brutes or Angels will facilitate informed choice making about the personal use of biotechnologies and the formulation of public policies governing their development and use. Ten biotechnologies that impact humans are considered: stem cell research, embryo selection, human genomics, gene therapies, human reproductive cloning, age retardation, cognition enhancement, the engineering of nonhuman organisms, nanobiology, and synthetic biology.
 
With deft and assured use of metaphors, analogies, diagrams, and photographs, James T. Bradley introduces important biological principles and the basic procedures used in biotechnology. Various ethical issues--personhood, personal identity, privacy, ethnic discrimination, distributive justice, authenticity and human nature, and the significance of mortality in the human life cycle--are presented in a clear and unbiased manner. Personal reflection and group dialogue are encouraged by questions at the end of each chapter, making this book not only a general guide to better informed and nuanced thinking on these complex and challenging topics but also an appropriate text for bioethics courses in university science departments and for adult education classes.
 
Standing at the beginning of the twenty-first century, with burgeoning abilities to enhance and even create life in ways unimaginable just a few decades ago, humans have an awesome responsibility to themselves and other species. Brutes or Angels invites us to engage each other in meaningful dialogue by listening, gathering information, formulating thoughtful views, and remaining open to new knowledge and ethical argumentation.
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The Code of Codes
Scientific and Social Issues in the Human Genome Project
Daniel Kevles
Harvard University Press, 1992

The human genome is the key to what makes us human. Composed of the many different genes found in our cells, it defines our possibilities and limitations as members of the species. The ultimate goal of the pioneering project outlined in this book is to map our genome in detail—an achievement that will revolutionize our understanding of human development and the expression of both our normal traits and our abnormal characteristics, such as disease. The Code of Codes is a collective exploration of the substance and possible consequences of this project in relation to ethics, law, and society as well as to science, technology, and medicine.

The many debates on the Human Genome Project are prompted in part by its extraordinary cost, which has raised questions about whether it represents the invasion of biology by the kind of Big Science symbolized by high-energy accelerators. While addressing these matters, this book recognizes that far more than money is at stake. Its intent is not to advance naive paeans for the project but to stimulate thought about the serious issues—scientific, social, and ethical—that it provokes. The Code of Codes comprises incisive essays by stellar figures in a variety of fields, including James D. Watson and Walter Gilbert and the social analysts of science Dorothy Nelkin and Evelyn Fox Keller. An authoritative review of the scientific underpinnings of the project is provided by Horace Freeland Judson, author of the bestselling Eighth Day of Creation.

The book’s broad and balanced coverage and the expertise of its contributors make The Code of Codes the most comprehensive and compelling exploration available on this history-making project.

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Genes And Human Self-Knowledge
Reflections On Modern Genetics
Robert F. Weir
University of Iowa Press, 1994

Contemporary developments in human genetics are profoundly meaningful, both for the rapidity of scientific discoveries and for their personal and social implications. The Human Genome Project, a worldwide effort to map the 50,000 to 100,000 genes making up the human blueprint, is creating new ways of understanding ourselves as individuals, as parents, as members of a family, an ethnic group, a species. Almost every day yet another medical detective finds a genetic clue to the long-running mystery of human identity.

In 1992, the University of Iowa Humanities Symposium provided a public forum to examine the issues—moral, conceptual, legal, and practical—in modern genetics that are crucial to all of us. This strong, challenging volume is a collection of the major essays presented by historians, philosophers, and other academic humanists to a multidisciplinary audience of molecular and clinical geneticists, genetic counselors, humanists, and members of the public. The essays explore the historical background, philosophical implications, and ethical issues related to the Human Genome Project as well as other developments in modern genetics.

The questions raised in these essays are dramatic and troubling. What kind of knowledge is being produced by molecular geneticists? Do individual human genomes differ significantly from each other? How much do females and males differ from each other at the molecular level? Is there any genetic basis for distinguishing among racial or ethical groups? Can current practices in genetics counseling be compared to the earlier eugenics movement? Will current research lead to updated views on genetic “normalcy” or even “superiority”?

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Postgenomics
Perspectives on Biology after the Genome
Sarah S. Richardson and Hallam Stevens, editors
Duke University Press, 2015
Ten years after the Human Genome Project’s completion the life sciences stand in a moment of uncertainty, transition, and contestation. The postgenomic era has seen rapid shifts in research methodology, funding, scientific labor, and disciplinary structures. Postgenomics is transforming our understanding of disease and health, our environment, and the categories of race, class, and gender. At the same time, the gene retains its centrality and power in biological and popular discourse. The contributors to Postgenomics analyze these ruptures and continuities and place them in historical, social, and political context. Postgenomics, they argue, forces a rethinking of the genome itself, and opens new territory for conversations between the social sciences, humanities, and life sciences.

Contributors. Russ Altman, Rachel A. Ankeny, Catherine Bliss, John Dupré, Michael Fortun, Evelyn Fox Keller, Sabina Leonelli, Adrian Mackenzie, Margot Moinester, Aaron Panofsky, Sarah S. Richardson, Sara Shostak, Hallam Stevens
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