Sahra Gibbon

Barbara Prainsack

Stephen Hilgartner

Janelle Lamoreaux

The Handbook provides an essential resource at the interface of Genomics, Health and Society, and forms a crucial research tool for both new students and established scholars across biomedicine and social sciences. Building from and extending the first Routledge Handbook of Genetics and Society, the book offers a comprehensive introduction to pivotal themes within the field, an overview of the current state of the art knowledge on genomics, science and society, and an outline of emerging areas of research. Key themes addressed include the way genomic based DNA technologies have become incorporated into diverse arenas of clinical practice and research whilst also extending beyond the clinic; the role of genomics in contemporary ‘bioeconomies’; how challenges in the governance of medical genomics can both reconfigure and stabilise regulatory processes and jurisdictional boundaries; how questions of diversity and justice are situated across different national and transnational terrains of genomic research; and how genomics informs – and is shaped by – developments in fields such as epigenetics, synthetic biology, stem cell, microbial and animal model research. Presenting cutting edge research from leading social science scholars, the Handbook provides a unique and important contribution to the field. It brings a rich and varied cross disciplinary social science perspective that engages with both the history and contemporary context of genomics and ‘post-genomics’, and considers the now global and transnational terrain in which these developments are unfolding.

Routledge Handbook of Genomics, Health and Society

Richard Hindmarsh

As DNA forensic profiling and databasing become established as key technologies in the toolbox of the forensic sciences, their expanding use raises important issues that promise to touch everyone's lives. In an authoritative global investigation of a diverse range of countries, including those at the forefront of these technologies' development and use, this book identifies and provides critical reflection upon the many issues of privacy; distributive justice; DNA information system ownership; biosurveillance; function creep; the reliability of collection, storage and analysis of DNA profiles; the possibility of transferring medical DNA information to forensics databases; and democratic involvement and transparency in governance, an emergent key theme. This book is timely and significant in providing the essential background and discussion of the ethical, legal and societal dimensions for academics, practitioners, public interest and criminal justice organisations, and students of the life sciences, law, politics, and sociology.

Global Governance of Forensic DNA Profiling and Databasing

Genetic Suspects

Alena Buyx

In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.

Solidarity in Biomedicine and Beyond

Reflections on an Emerging Concept in Bioethics

Solidarity

Helena Machado

The real heroes of television crime shows in the twenty-first century are no longer police detectives but forensic technologies. The immense popularity of high-tech crime television shows has changed the way in which crime scene work is viewed. The term 'CSI-effect' was coined to signify a situation where people's views and practices have been influenced by such media representations, e.g. judges and jurors putting more weight on forensic evidence that has been produced with high-tech tools - in particular, DNA evidence - than on other kinds of evidence. While considerable scholarly attention has been paid to examining the CSI effect on publics, jurors, judges, and police investigators, prisoners' views on forensic technologies and policing have been under-explored. Drawing on a research sample of over 50 interviews carried out with prisoners in Portugal and Austria, this groundbreaking book shows how prisoners view crime scene traces, how they understand crime scene technologies, and what effect they attribute to the existence of large police databases on their own lives, careers, and futures. Through critically engaging with STS, sociological and criminological perspectives on the use of DNA technologies within the criminal justice system, this work provides the reader with valuable insights into the effect of different legal, political, discursive, and historical configurations on how crime scene technologies are utilized by the police and related to by convicted offenders.

Prisoners' Views in the Era of CSI

Tracing Technologies

Inside today's data-driven personalized medicine, and the time, effort, and information required from patients to make it a reality Medicine has been personal long before the concept of “personalized medicine” became popular. Health professionals have always taken into consideration the individual characteristics of their patients when diagnosing, and treating them. Patients have cared for themselves and for each other, contributed to medical research, and advocated for new treatments. Given this history, why has the notion of personalized medicine gained so much traction at the beginning of the new millennium? Personalized Medicine investigates the recent movement for patients’ involvement in how they are treated, diagnosed, and medicated; a movement that accompanies the increasingly popular idea that people should be proactive, well-informed participants in their own healthcare. While it is often the case that participatory practices in medicine are celebrated as instances of patient empowerment or, alternatively, are dismissed as cases of patient exploitation, Barbara Prainsack challenges these views to illustrate how personalized medicine can give rise to a technology-focused individualism, yet also present new opportunities to strengthen solidarity. Facing the future, this book reveals how medicine informed by digital, quantified, and computable information is already changing the personalization movement, providing a contemporary twist on how medical symptoms or ailments are shared and discussed in society. Bringing together empirical work and critical scholarship from medicine, public health, data governance, bioethics, and digital sociology, Personalized Medicine analyzes the challenges of personalization driven by patient work and data. This compelling volume proposes an understanding that uses novel technological practices to foreground the needs and interests of patients, instead of being ruled by them.

Empowered Patients in the 21st Century?

Personalized Medicine

Silke Schicktanz

Gabriele Werner-Felmayer

Recent debate about the ethical and regulatory dimensions of developments in genetics has sidelined societal and cultural aspects, which arguably are indispensable for a nuanced understanding of the complexities of the topic. Regulatory and ethical debates benefit from taking seriously this ’third dimension’ of culture, which often determines the configurations and limits of the space within which scientific, ethical and legal debate can take place. To fill this gap, this volume brings together contributions exploring the mutual relationships between genetics, markets, societies and identities in genetics and genomics. It draws upon the recent transdisciplinary debate on how socio-cultural factors influence understandings of ’genetics2.0' and shows how individual and collective identities are challenged or reinforced by cultural meanings and practices of genetics. This book will become a standard reference for everyone seeking to make sense of the controversies and shifts in the field of genetics in the second decade of the twenty-first century.

Transdisciplinary Views on Science and Culture

Genetics as Social Practice

Scott Frickel

Mathieu Albert

Interdisciplinarity has become a buzzword in academia, as research universities funnel their financial resources toward collaborations between faculty in different disciplines. In theory, interdisciplinary collaboration breaks down artificial divisions between different departments, allowing more innovative and sophisticated research to flourish. But does it actually work this way in practice? Investigating Interdisciplinary Collaboration puts the common beliefs about such research to the test, using empirical data gathered by scholars from the United States, Canada, and Great Britain. The book’s contributors critically interrogate the assumptions underlying the fervor for interdisciplinarity. Their attentive scholarship reveals how, for all its potential benefits, interdisciplinary collaboration is neither immune to academia’s status hierarchies, nor a simple antidote to the alleged shortcomings of disciplinary study. Chapter 10 is available Open Access here (https://www.ncbi.nlm.nih.gov/books/NBK395883)

Barbara Prainsack

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