The ethics and challenges of studying the genetics of marginalized populations

The ethics and challenges of studying the genetics of marginalized populations PDF Author: Arslan A. Zaidi
Publisher: Frontiers Media SA
ISBN: 2832534244
Category : Science
Languages : en
Pages : 83

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Book Description

The ethics and challenges of studying the genetics of marginalized populations

The ethics and challenges of studying the genetics of marginalized populations PDF Author: Arslan A. Zaidi
Publisher: Frontiers Media SA
ISBN: 2832534244
Category : Science
Languages : en
Pages : 83

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Book Description


The SAGE Handbook of Online Research Methods

The SAGE Handbook of Online Research Methods PDF Author: Nigel G Fielding
Publisher: SAGE
ISBN: 1473959306
Category : Social Science
Languages : en
Pages : 685

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Book Description
Online research methods are popular, dynamic and fast-changing. Following on from the great success of the first edition, published in 2008, The SAGE Handbook of Online Research Methods, Second Edition offers both updates of existing subject areas and new chapters covering more recent developments, such as social media, big data, data visualization and CAQDAS. Bringing together the leading names in both qualitative and quantitative online research, this new edition is organised into nine sections: 1. Online Research Methods 2. Designing Online Research 3. Online Data Capture and Data Collection 4. The Online Survey 5. Digital Quantitative Analysis 6. Digital Text Analysis 7. Virtual Ethnography 8. Online Secondary Analysis: Resources and Methods 9. The Future of Online Social Research The SAGE Handbook of Online Research Methods, Second Edition is an essential resource for anyone interested in the contemporary practice of computer-mediated research and scholarship.

The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks PDF Author: Rebecca Skloot
Publisher: Crown
ISBN: 0307589382
Category : Science
Languages : en
Pages : 386

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Book Description
#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.

Communities in Action

Communities in Action PDF Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
ISBN: 0309452961
Category : Medical
Languages : en
Pages : 583

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Book Description
In the United States, some populations suffer from far greater disparities in health than others. Those disparities are caused not only by fundamental differences in health status across segments of the population, but also because of inequities in factors that impact health status, so-called determinants of health. Only part of an individual's health status depends on his or her behavior and choice; community-wide problems like poverty, unemployment, poor education, inadequate housing, poor public transportation, interpersonal violence, and decaying neighborhoods also contribute to health inequities, as well as the historic and ongoing interplay of structures, policies, and norms that shape lives. When these factors are not optimal in a community, it does not mean they are intractable: such inequities can be mitigated by social policies that can shape health in powerful ways. Communities in Action: Pathways to Health Equity seeks to delineate the causes of and the solutions to health inequities in the United States. This report focuses on what communities can do to promote health equity, what actions are needed by the many and varied stakeholders that are part of communities or support them, as well as the root causes and structural barriers that need to be overcome.

A Genetic Perspective on Asian Populations

A Genetic Perspective on Asian Populations PDF Author: Wibhu Kutanan
Publisher: Frontiers Media SA
ISBN: 2889764702
Category : Science
Languages : en
Pages : 201

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Book Description


Genetics, Ethics and Education

Genetics, Ethics and Education PDF Author: Susan Bouregy
Publisher: Cambridge University Press
ISBN: 1108622518
Category : Psychology
Languages : en
Pages : 421

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Book Description
Advances in human genetics and genomics are beginning to move outside the traditional realm of medicine and into the classroom. How will educational officials react when asked to incorporate personalized genomic information into the educational program? This volume bridges the divide between science, education and ethics around the emergent integration of genomics and education. By pairing comprehensive analysis of the issues with primers on the underlying science, the authors put all relevant parties on a level field to facilitate thorough consideration and educated discussion regarding how to move forward in this new era, as well as how best to support the future of education and the future of all students. The volume is unique in bringing together not only scholarly experts but also parents and laypersons. In doing so, it gives voice and understanding to a broad spectrum of disciplines that have a stake in the future of education.

The Oxford Handbook of Ethics of AI

The Oxford Handbook of Ethics of AI PDF Author: Markus Dirk Dubber
Publisher:
ISBN: 019006739X
Category : Business & Economics
Languages : en
Pages : 896

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Book Description
This interdisciplinary and international handbook captures and shapes much needed reflection on normative frameworks for the production, application, and use of artificial intelligence in all spheres of individual, commercial, social, and public life.

Altered Inheritance

Altered Inheritance PDF Author: Françoise Baylis
Publisher: Harvard University Press
ISBN: 0674976711
Category : Science
Languages : en
Pages : 305

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Book Description
A leading bioethicist offers critical insights into the scientific, ethical, and political implications of human genome editing. Designer babies, once found only in science fiction, have become a reality. We are entering a new era of human evolution with the advent of a technology called CRISPR, which allows scientists to modify our genes. Although CRISPR shows great promise for therapeutic use, it raises thorny ethical, legal, political, and societal concerns because it can be used to make permanent changes to future generations. What if changes intended for the good turn out to have unforeseen negative effects? What if the divide between the haves and have-nots widens as a result? Who decides whether we genetically modify human beings and, if so, how? Françoise Baylis insists that we must all have a role in determining our future as a species. The scientists who develop and use genome-editing tools should not be the only ones making decisions about future uses of the technology. Such decisions must be the fruit of a broad societal consensus. Baylis argues that it is in our collective interest to assess and steer the development and implementation of biomedical technologies. Members of the public with different interests and diverse perspectives must be among the decision makers; only in this way can we ensure that societal concerns are taken into account and that responsible decisions are made. We must be engaged and informed, think critically, and raise our voices as we create our future together. Sharp, rousing, timely, and thought-provoking, Altered Inheritance is essential reading. The future of humanity is in our hands.

The Oxford Textbook of Clinical Research Ethics

The Oxford Textbook of Clinical Research Ethics PDF Author: Ezekiel J. Emanuel
Publisher: OUP USA
ISBN: 0199768633
Category : Medical
Languages : en
Pages : 848

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Book Description
The Oxford Textbook of Clinical Research Ethics is the first comprehensive and systematic reference on clinical research ethics. Under the editorship of experts from the U.S. National Institutes of Health of the United States, the book's 73 chapters offer a wide-ranging and systematic examination of all aspects of research with human beings. Considering the historical triumphs of research as well as its tragedies, the textbook provides a framework for analyzing the ethical aspects of research studies with human beings. Through both conceptual analysis and systematic reviews of empirical data, the contributors examine issues ranging from scientific validity, fair subject selection, risk benefit ratio, independent review, and informed consent to focused consideration of international research ethics, conflicts of interests, and other aspects of responsible conduct of research. The editors of The Oxford Textbook of Clinical Research Ethics offer a work that critically assesses and advances scholarship in the field of human subjects research. Comprehensive in scope and depth, this book will be a crucial resource for researchers in the medical sciences, as well as teachers and students.

International Ethical Guidelines for Health-Related Research Involving Humans

International Ethical Guidelines for Health-Related Research Involving Humans PDF Author: Council for International Organizations of Medical Sciences (CIOMS)
Publisher: World Health Organization
ISBN: 9789290360889
Category : Bioethics
Languages : en
Pages : 0

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Book Description
"In the new 2016 version of the ethical guidelines, CIOMS provides answers to a number of pressing issues in research ethics. The Council does so by stressing the need for research having scientific and social value, by providing special guidelines for health-related research in low-resource settings, by detailing the provisions for involving vulnerable groups in research and for describing under what conditions biological samples and health-related data can be used for research."--Page 4 de la couverture.