Genetic advocacy groups, science, and biovalue : creating political economies of hope / Carlos Novas -- Patients as public in ethics debates--interpreting the role of patient organizations in democracy / Annemiek Nelis, Gerard de Vries, and Rob Hagendijk -- From "scraps and fragments" to "whole organisms" : molecular biology, clinical research, and post genomic bodies / Susan E. Kelly -- Fashioning flesh : inclusion, exclusivity, and the potential of genomics / Fiona O'Neill -- Mapping origins : race and relatedness in population genetics and genetic genealogy / Catherine Nash
"A good companion for those with a science background interested in learning more about human genetics." —Booklist Thanks to the popularity of personal genetic testing services, it's now easier than ever to get information about our own unique DNA—but who does this information really benefit? And, as genome editing and gene therapy transform the healthcare landscape, what do we gain—and what might we give up in return? Inside each of your cells is the nucleus, a small structure that contains all of the genetic information encoded by the DNA inside, your genome. Not long ago, the first human genome was sequenced at a cost of nearly $3 billion; now, this same test can be done for about $1,000. This new accessibility of genome sequence information creates huge potential for advances in how we understand and treat disease, among other things. It also raises significant concerns regarding ethics and personal privacy. In Mapping Humanity: How Modern Genetics Is Changing Criminal Justice, Personalized Medicine, and Our Identities, cellular biology expert Joshua Z. Rappoport provides a detailed look at how the explosion in genetic information as a result of cutting-edge technologies is changing our lives and our world. Inside, discover: • An in-depth look at how your personal genome creates the unique individual that you are • How doctors are using DNA sequencing to identify the underlying genetic causes of disease • Why the field of gene therapy offers amazing potential for medical breakthroughs—and why it's taking so long • The fantastic potential—and troubling concerns—surrounding genome editing • The real impact—and validity—of popular personal genetic testing products, such as 23andMe • Details of how molecular biology and DNA are changing the criminal justice system • Facts you should know about Genetically Modified Organisms (GMOs) Throughout, in compelling, accessible prose, Rappoport explores the societal, ethical, and economic impacts of this new era. Offering a framework for balancing the potential risks and benefits of genetic information technologies and genetic engineering, Mapping Humanity is an indispensable guide to navigating the possibilities and perils of our gene-centric future.
Racial and ethnic categories have appeared in recent scientific work in novel ways and in relation to a variety of disciplines: medicine, forensics, population genetics and also developments in popular genealogy. Once again, biology is foregrounded in the discussion of human identity. Of particular importance is the preoccupation with origins and personal discovery and the increasing use of racial and ethnic categories in social policy. This new genetic knowledge, expressed in technology and practice, has the potential to disrupt how race and ethnicity are debated, managed and lived. As such, this volume investigates the ways in which existing social categories are both maintained and transformed at the intersection of the natural (sciences) and the cultural (politics). The contributors include medical researchers, anthropologists, historians of science and sociologists of race relations; together, they explore the new and challenging landscape where biology becomes the stuff of identity.
What implications are applications of new genetic technologies in biomedicine having on social identity in today’s society? New Genetics, New Identities, a wide-ranging multi-disciplinary volume in the CESAGen Genetics & Society Book series, presents not only theoretical reflection but also empirical case studies drawn from an international array of authors. Including the highly controversial areas of reproductive technologies and use of human embryos in biomedical research, other key features include: a fresh analysis of a wide-range of social and political concerns in the development of new social identities examinations of the social implications of identity formation as a result from advances in genetic technologies from a number of perspectives both locally and globally resources of a wide range of social science disciplines to discuss significant sociological, anthropological, political and ethical issues. This superb collection is an essential informative read for postgraduates and academics in the fields of sociology, anthropology and scientific technologies giving a comparative approach to complex issues surrounding the social implications of these advances in a period of rapid social change.
Biosocialities, Genetics and the Social Sciences explores the social, cultural and economic transformations that result from innovations in genomic knowledge and technology. This pioneering collection uses Paul Rabinow’s concept of biosociality to chart the shifts in social relations and ideas about nature, biology and identity brought about by developments in biomedicine. Based on new empirical research, it contains chapters on genomic research into embryonic stem cell therapy, breast cancer, autism, Parkinson’s and IVF treatment, as well as on the expectations and education surrounding genomic research. It covers four main themes: novel modes of identity and identification, such as genetic citizenship the role of institutions, ranging from disease advocacy organizations and voluntary organizations to the state the production of biological knowledge, novel life-forms, and technologies the generation of wealth and commercial interests in biology. Including an afterword by Paul Rabinow and case studies on the UK, US, Canada, Germany, India and Israel, this book is key reading for students and researchers of the new genetics and the social sciences – particularly medical sociologists, medical anthropologists and those involved with science and technology studies.
Online genetic testing services are increasingly being offered to consumers who are becoming exposed to, and knowledgeable about, new kinds of genetic technologies, as the launch of a 23andme genetic testing product in the UK testifies. Genetic research breakthroughs, cheek swabbing forensic pathologists and celebrities discovering their ancestral roots are littered throughout the North American, European and Australasian media landscapes. Genetic testing is now capturing the attention, and imagination, of hundreds of thousands of people who can not only buy genetic tests online, but can also go online to find relatives, share their results with strangers, sign up for personal DNA-based musical scores, and take part in research. This book critically examines this market of direct-to-consumer (DTC) genetic testing from a social science perspective, asking, what happens when genetics goes online? With a focus on genetic testing for disease, the book is about the new social arrangements which emerge when a traditionally clinical practice (genetic testing) is taken into new spaces (the internet). It examines the intersections of new genetics and new media by drawing from three different fields: internet studies; the sociology of health; and science and technology studies. While there has been a surge of research activity concerning DTC genetic testing, particularly in sociology, ethics and law, this is the first scholarly monograph on the topic, and the first book which brings together the social study of genetics and the social study of digital technologies. This book thus not only offers a new overview of this field, but also offers a unique contribution by attending to the digital, and by drawing upon empirical examples from our own research of DTC genetic testing websites (using online methods) and in-depth interviews in the United Kingdom with people using healthcare services.
What does it mean to be told you have an increased risk of genetic breast cancer because you are of Ashkenazi Jewish origin? In a time of ever increasing knowledge about variations in genetic disease risk among different populations, there is a pressing need for research regarding the implications of such information for members of high-risk populations. With first hand, intimate descriptions of women's experiences of being Jewish and of being at increased risk of genetic breast cancer, this book offers new insight into the ongoing debates regarding the implications of genetic research for populations, and of new genetic knowledge for individual and collective identity.
The unexpected story of how genetic testing is affecting race in America We know DNA is a master key that unlocks medical and forensic secrets, but its genealogical life is both revelatory and endlessly fascinating. Tracing genealogy is now the second-most popular hobby amongst Americans, as well as the second-most visited online category. This billion-dollar industry has spawned popular television shows, websites, and Internet communities, and a booming heritage tourism circuit. The tsunami of interest in genetic ancestry tracing from the African American community has been especially overwhelming. In The Social Life of DNA, Alondra Nelson takes us on an unprecedented journey into how the double helix has wound its way into the heart of the most urgent contemporary social issues around race. For over a decade, Nelson has deeply studied this phenomenon. Artfully weaving together keenly observed interactions with root-seekers alongside illuminating historical details and revealing personal narrative, she shows that genetic genealogy is a new tool for addressing old and enduring issues. In The Social Life of DNA, she explains how these cutting-edge DNA-based techniques are being used in myriad ways, including grappling with the unfinished business of slavery: to foster reconciliation, to establish ties with African ancestral homelands, to rethink and sometimes alter citizenship, and to make legal claims for slavery reparations specifically based on ancestry. Nelson incisively shows that DNA is a portal to the past that yields insight for the present and future, shining a light on social traumas and historical injustices that still resonate today. Science can be a crucial ally to activism to spur social change and transform twenty-first-century racial politics. But Nelson warns her readers to be discerning: for the social repair we seek can't be found in even the most sophisticated science. Engrossing and highly original, The Social Life of DNA is a must-read for anyone interested in race, science, history and how our reckoning with the past may help us to chart a more just course for tomorrow.
