Biobanking, an emerging field supported by academia, industry and health administrators alike, is distinctly different today from the practice that once defined it. The science of Biobanking, which initially involved simply storing blood or tissue samples in a freezer, is now a highly sophisticated field of research, and expected to grow exponentially over the next decade or two. This book aims to serve the purpose of further enriching the available literature on Biobanking, by offering unique and more useful collection of ideas for the future. The book outlines the experiences of developing modern Biobanking repositories in different countries, whilst covering specific topics regarding the many aspects of Biobanking. This book will be of interest to a wide range of readers including: academics, students, volunteers and advocates of patients’ rights.

Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .

An anthropological study based on ethnographic work in Israel and Qatar explores the relationship between science, particularly genetics, and national identity. Based on ethnographic work in Israel and Qatar, two small Middle Eastern ethnonations with significant biomedical resources, Genomic Citizenship explores the relationship between science and identity. Ian McGonigle, originally trained as a biochemist, draws on anthropological theory, STS, intellectual history, critical theory, Middle Eastern studies, cultural studies, and critical legal studies. He connects biomedical research on ethnic populations to the political, economic, legal, and historical context of the state; to global trends in genetic medicine; and to the politics of identity in the context of global biomedical research. Genomic Citizenship is more an anthropology of scientific objects than an anthropology of scientists or an ethnography of the laboratory. McGonigle bases his untraditional project on traditional anthropological methods, including participant observation. Some of the most persuasive data in the book are from public records, legal and historical sources, published scientific papers, institutional reports, websites, and brochures. McGonigle discusses biological understandings of Jewishness, especially in relation to the intellectual history of Zionism and Jewish political thought, and considers the possibility of a novel application of genetics in assigning Israeli citizenship. He also describes developments in genetic medicine in Qatar and analyzes the Qatari Biobank in the context of Qatari nationalism and state-building projects. Considering possible consequences of findings on the diverse origins of the Qatari population for tribal identities, he argues that the nation cannot be defined as either a purely natural or biological entity. Rather, it is reified, reinscribed, and refracted through genomic research and discourse.

#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.

Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases. The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases.

Winner of the 2014 John Collier Jr. Award Winner of the Jo Anne Stolaroff Cotsen Prize Life at Home in the Twenty-First Century cross-cuts the ranks of important books on social history, consumerism, contemporary culture, the meaning of material culture, domestic architecture, and household ethnoarchaeology. It is a distant cousin of Material World and Hungry Planet in content and style, but represents a blend of rigorous science and photography that these books can claim. Using archaeological approaches to human material culture, this volume offers unprecedented access to the middle-class American home through the kaleidoscopic lens of no-limits photography and many kinds of never-before acquired data about how people actually live their lives at home. Based on a rigorous, nine-year project at UCLA, this book has appeal not only to scientists but also to all people who share intense curiosity about what goes on at home in their neighborhoods. Many who read the book will see their own lives mirrored in these pages and can reflect on how other people cope with their mountains of possessions and other daily challenges. Readers abroad will be equally fascinated by the contrasts between their own kinds of materialism and the typical American experience. The book will interest a range of designers, builders, and architects as well as scholars and students who research various facets of U.S. and global consumerism, cultural history, and economic history.