The ethics and challenges of studying the genetics of marginalized populations
Author | : Arslan A. Zaidi |
Publisher | : Frontiers Media SA |
Total Pages | : 83 |
Release | : 2023-09-25 |
Genre | : Science |
ISBN | : 2832534244 |
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Author | : Arslan A. Zaidi |
Publisher | : Frontiers Media SA |
Total Pages | : 83 |
Release | : 2023-09-25 |
Genre | : Science |
ISBN | : 2832534244 |
Author | : Wibhu Kutanan |
Publisher | : Frontiers Media SA |
Total Pages | : 201 |
Release | : 2022-06-30 |
Genre | : Science |
ISBN | : 2889764702 |
Author | : National Academies of Sciences, Engineering, and Medicine |
Publisher | : National Academies Press |
Total Pages | : 583 |
Release | : 2017-04-27 |
Genre | : Medical |
ISBN | : 0309452961 |
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.
Author | : Susan Bouregy |
Publisher | : Cambridge University Press |
Total Pages | : 421 |
Release | : 2017-10-05 |
Genre | : Psychology |
ISBN | : 1108622518 |
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.
Author | : Rebecca Skloot |
Publisher | : Crown |
Total Pages | : 386 |
Release | : 2010-02-02 |
Genre | : Science |
ISBN | : 0307589382 |
#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.
Author | : Ezekiel J. Emanuel |
Publisher | : OUP USA |
Total Pages | : 848 |
Release | : 2011-02 |
Genre | : Medical |
ISBN | : 0199768633 |
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.
Author | : Nigel G Fielding |
Publisher | : SAGE |
Total Pages | : 685 |
Release | : 2016-09-30 |
Genre | : Social Science |
ISBN | : 1473959306 |
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.
Author | : Markus D. Dubber |
Publisher | : Oxford University Press |
Total Pages | : 1000 |
Release | : 2020-06-30 |
Genre | : Law |
ISBN | : 0190067411 |
This volume tackles a quickly-evolving field of inquiry, mapping the existing discourse as part of a general attempt to place current developments in historical context; at the same time, breaking new ground in taking on novel subjects and pursuing fresh approaches. The term "A.I." is used to refer to a broad range of phenomena, from machine learning and data mining to artificial general intelligence. The recent advent of more sophisticated AI systems, which function with partial or full autonomy and are capable of tasks which require learning and 'intelligence', presents difficult ethical questions, and has drawn concerns from many quarters about individual and societal welfare, democratic decision-making, moral agency, and the prevention of harm. This work ranges from explorations of normative constraints on specific applications of machine learning algorithms today-in everyday medical practice, for instance-to reflections on the (potential) status of AI as a form of consciousness with attendant rights and duties and, more generally still, on the conceptual terms and frameworks necessarily to understand tasks requiring intelligence, whether "human" or "A.I."
Author | : Françoise Baylis |
Publisher | : Harvard University Press |
Total Pages | : 305 |
Release | : 2019-09-17 |
Genre | : Science |
ISBN | : 0674976711 |
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.
Author | : Edenilson Brandl |
Publisher | : Edenilson Brandl |
Total Pages | : 1473 |
Release | : |
Genre | : Psychology |
ISBN | : |
In recent years, there has been growing recognition of the profound psychological impact that genetic disorders such as Usher Syndrome can have on individuals and their families. Usher Syndrome, which affects both hearing and vision, presents not only physical challenges but also significant emotional and mental health obstacles that can alter the course of a person's life. As a result, psychological support has become an essential component of comprehensive care for those living with this condition. This book, "Psychological Support by Cognitive Behavioral Therapy for Usher Syndrome," was written to provide a practical and evidence-based guide to understanding and managing the psychological consequences of living with a chronic genetic disorder. Cognitive Behavioral Therapy (CBT) has emerged as a leading approach to helping individuals navigate the mental health challenges associated with conditions like Usher Syndrome. Through this therapy, people can develop the tools they need to cope with trauma, anxiety, depression, and the profound changes that come with progressive sensory loss. The content of this book aims to provide both a theoretical and practical framework for supporting individuals with Usher Syndrome. From understanding the genetic and biological underpinnings of the condition to exploring the psychological and emotional aspects of living with it, this book provides a holistic perspective. Special emphasis is placed on CBT techniques, tailored approaches, and actionable tools for managing the psychological toll of genetic illness. Additionally, the book delves into broader topics, including the biology of trauma, the fundamentals of genetics, and the importance of personalized therapeutic approaches. It is designed to serve not only clinicians and therapists but also individuals living with Usher Syndrome and their families, offering them knowledge, guidance, and practical strategies for improving their mental well-being. As you journey through the following chapters, it is my hope that this book will serve as a valuable resource for enhancing both the psychological resilience and quality of life of those affected by Usher Syndrome.