El. knyga: Postgenomic Condition: Ethics, Justice, and Knowledge after the Genome

As the jubilation surrounding the publication of the human genome sequence ended, a question at once sobering and exciting moved to the fore: now that we have ?the human genome,” what does it mean? Drawing upon trust built over twenty years first working in molecular biology laboratories, and then chronicling the emergence of human genomics Jenny Reardon crafts stories that bring the reader into these much richer spaces where the meaning of genomic data and its value are being forged. In these spaces efforts to provide open access to genomic data in the name of medical breakthroughs meet the particular bodies, histories, and constraints of the people asked to offer up their genomes. Aspirations of free movement of data meet the lived realities of persons and worlds bound by resource limitations and conflicting values. While the news media is filled with grand visions of future designer drugs and babies, The Postgenomic Condition brings into view the hard on-the-ground questions of science and justice generated as many over the course of the last decade attempted to make the human genome central to living today.

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.