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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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front cover of French DNA
French DNA
Trouble in Purgatory
Paul Rabinow
University of Chicago Press, 1999
In 1993, an American biotechnology company and a French genetics lab developed a collaborative research plan to search for diabetes genes. But just as the project was to begin, the French government called it to a halt, barring the laboratory from sharing something never previously thought of as a commodity unto itself: French DNA.
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The Postgenomic Condition
Ethics, Justice, and Knowledge after the Genome
Jenny Reardon
University of Chicago Press, 2017
Now that we have sequenced the human genome, what does it mean? In The Postgenomic Condition, Jenny Reardon critically examines the decade after the Human Genome Project, and the fundamental questions about meaning, value and justice this landmark achievement left in its wake.

Drawing on more than a decade of research—in molecular biology labs, commercial startups, governmental agencies, and civic spaces—Reardon demonstrates how the extensive efforts to transform genomics from high tech informatics practiced by a few to meaningful knowledge beneficial to all exposed the limits of long-cherished liberal modes of knowing and governing life. Those in the American South challenged the value of being included in genomics when no hospital served their community.  Ethicists and lawyers charged with overseeing Scottish DNA and data questioned how to develop a system of ownership for these resources when their capacity to create things of value—new personalized treatments—remained largely unrealized. Molecular biologists who pioneered genomics asked whether their practices of thinking could survive the deluge of data produced by the growing power of sequencing machines. While the media is filled with grand visions of precision medicine, The Postgenomic Condition shares these actual challenges of the scientists, entrepreneurs, policy makers, bioethicists, lawyers, and patient advocates who sought to leverage liberal democratic practices to render genomic data a new source of meaning and value for interpreting and caring for life. It brings into rich empirical focus the resulting hard on-the-ground questions about how to know and live on a depleted but data-rich, interconnected yet fractured planet, where technoscience garners significant resources, but deeper questions of knowledge and justice urgently demand attention.
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front cover of Sex Itself
Sex Itself
The Search for Male and Female in the Human Genome
Sarah S. Richardson
University of Chicago Press, 2013
Human genomes are 99.9 percent identical—with one prominent exception. Instead of a matching pair of X chromosomes, men carry a single X, coupled with a tiny chromosome called the Y. Tracking the emergence of a new and distinctive way of thinking about sex represented by the unalterable, simple, and visually compelling binary of the X and Y chromosomes, Sex Itself examines the interaction between cultural gender norms and genetic theories of sex from the beginning of the twentieth century to the present, postgenomic age.
           
Using methods from history, philosophy, and gender studies of science, Sarah S. Richardson uncovers how gender has helped to shape the research practices, questions asked, theories and models, and descriptive language used in sex chromosome research. From the earliest theories of chromosomal sex determination, to the mid-century hypothesis of the aggressive XYY supermale, to the debate about Y chromosome degeneration, to the recent claim that male and female genomes are more different than those of humans and chimpanzees, Richardson shows how cultural gender conceptions influence the genetic science of sex. 
           
Richardson shows how sexual science of the past continues to resonate, in ways both subtle and explicit, in contemporary research on the genetics of sex and gender. With the completion of the Human Genome Project, genes and chromosomes are moving to the center of the biology of sex. Sex Itself offers a compelling argument for the importance of ongoing critical dialogue on how cultural conceptions of gender operate within the science of sex.
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