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The Ethics And Challenges Of Studying The Genetics Of Marginalized Populations
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Book Synopsis The ethics and challenges of studying the genetics of marginalized populations by : Arslan A. Zaidi
Download or read book The ethics and challenges of studying the genetics of marginalized populations written by Arslan A. Zaidi and published by Frontiers Media SA. This book was released on 2023-09-25 with total page 83 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309452961 Total Pages :583 pages Book Rating :4.3/5 (94 download)
Book Synopsis Communities in Action by : National Academies of Sciences, Engineering, and Medicine
Download or read book Communities in Action written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-04-27 with total page 583 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis A Genetic Perspective on Asian Populations by : Wibhu Kutanan
Download or read book A Genetic Perspective on Asian Populations written by Wibhu Kutanan and published by Frontiers Media SA. This book was released on 2022-06-30 with total page 201 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis The Immortal Life of Henrietta Lacks by : Rebecca Skloot
Download or read book The Immortal Life of Henrietta Lacks written by Rebecca Skloot and published by Crown. This book was released on 2010-02-02 with total page 386 pages. Available in PDF, EPUB and Kindle. Book excerpt: #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.
Book Synopsis Genetics, Ethics and Education by : Susan Bouregy
Download or read book Genetics, Ethics and Education written by Susan Bouregy and published by Cambridge University Press. This book was released on 2017-10-05 with total page 421 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis The SAGE Handbook of Online Research Methods by : Nigel G Fielding
Download or read book The SAGE Handbook of Online Research Methods written by Nigel G Fielding and published by SAGE. This book was released on 2016-09-30 with total page 685 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis The Oxford Textbook of Clinical Research Ethics by : Ezekiel J. Emanuel
Download or read book The Oxford Textbook of Clinical Research Ethics written by Ezekiel J. Emanuel and published by OUP USA. This book was released on 2011-02 with total page 848 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Oxford Handbook of Ethics of AI by : Markus D. Dubber
Download or read book Oxford Handbook of Ethics of AI written by Markus D. Dubber and published by Oxford University Press. This book was released on 2020-06-30 with total page 1000 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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."
Book Synopsis Altered Inheritance by : Françoise Baylis
Download or read book Altered Inheritance written by Françoise Baylis and published by Harvard University Press. This book was released on 2019-09-17 with total page 305 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Catholic Bioethics and Social Justice by : M. Therese Lysaught
Download or read book Catholic Bioethics and Social Justice written by M. Therese Lysaught and published by Liturgical Press. This book was released on 2018-11-16 with total page 464 pages. Available in PDF, EPUB and Kindle. Book excerpt: Catholic health care is one of the key places where the church lives Catholic social teaching (CST). Yet the individualistic methodology of Catholic bioethics inherited from the manualist tradition has yet to incorporate this critical component of the Catholic moral tradition. Informed by the places where Catholic health care intersects with the diverse societal injustices embodied in the patients it encounters, this book brings the lens of CST to bear on Catholic health care, illuminating a new spectrum of ethical issues and practical recommendations from social determinants of health, immigration, diversity and disparities, behavioral health, gender-questioning patients, and environmental and global health issues.
Book Synopsis PSYCHOLOGICAL SUPPORT BY COGNITIVE BEHAVIORAL THERAPY FOR USHER SYNDROME by : Edenilson Brandl
Download or read book PSYCHOLOGICAL SUPPORT BY COGNITIVE BEHAVIORAL THERAPY FOR USHER SYNDROME written by Edenilson Brandl and published by Edenilson Brandl. This book was released on with total page 1473 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Biobanking in the 21st Century by : Feridoun Karimi-Busheri
Download or read book Biobanking in the 21st Century written by Feridoun Karimi-Busheri and published by Springer. This book was released on 2015-09-29 with total page 188 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Bioinformatics, Medical Informatics and the Law by : Contreras, Jorge L.
Download or read book Bioinformatics, Medical Informatics and the Law written by Contreras, Jorge L. and published by Edward Elgar Publishing. This book was released on 2022-01-11 with total page 328 pages. Available in PDF, EPUB and Kindle. Book excerpt: In recent years the field of bioinformatics has emerged from the university research laboratory and entered the mainstream healthcare establishment. During this time there has been a rapid increase of legal developments affecting this dynamic field, from Supreme Court decisions radically altering the patentability of informatics inventions to major developments in privacy law both in Europe and the U.S. This edited book strives to offer the reader insight into some of the major legal trends and considerations applicable to these fields today.
Book Synopsis Public Health Ethics: Cases Spanning the Globe by : Drue H. Barrett
Download or read book Public Health Ethics: Cases Spanning the Globe written by Drue H. Barrett and published by Springer. This book was released on 2016-04-20 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: This Open Access book highlights the ethical issues and dilemmas that arise in the practice of public health. It is also a tool to support instruction, debate, and dialogue regarding public health ethics. Although the practice of public health has always included consideration of ethical issues, the field of public health ethics as a discipline is a relatively new and emerging area. There are few practical training resources for public health practitioners, especially resources which include discussion of realistic cases which are likely to arise in the practice of public health. This work discusses these issues on a case to case basis and helps create awareness and understanding of the ethics of public health care. The main audience for the casebook is public health practitioners, including front-line workers, field epidemiology trainers and trainees, managers, planners, and decision makers who have an interest in learning about how to integrate ethical analysis into their day to day public health practice. The casebook is also useful to schools of public health and public health students as well as to academic ethicists who can use the book to teach public health ethics and distinguish it from clinical and research ethics.
Author :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309388708 Total Pages :201 pages Book Rating :4.3/5 (93 download)
Book Synopsis Mitochondrial Replacement Techniques by : National Academies of Sciences, Engineering, and Medicine
Download or read book Mitochondrial Replacement Techniques written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2016-04-17 with total page 201 pages. Available in PDF, EPUB and Kindle. Book excerpt: Mitochondrial replacement techniques (MRTs) are designed to prevent the transmission of mitochondrial DNA (mtDNA) diseases from mother to child. While MRTs, if effective, could satisfy a desire of women seeking to have a genetically related child without the risk of passing on mtDNA disease, the technique raises significant ethical and social issues. It would create offspring who have genetic material from two women, something never sanctioned in humans, and would create mitochondrial changes that could be heritable (in female offspring), and therefore passed on in perpetuity. The manipulation would be performed on eggs or embryos, would affect every cell of the resulting individual, and once carried out this genetic manipulation is not reversible. Mitochondrial Replacement Techniques considers the implications of manipulating mitochondrial content both in children born to women as a result of participating in these studies and in descendants of any female offspring. This study examines the ethical and social issues related to MRTs, outlines principles that would provide a framework and foundation for oversight of MRTs, and develops recommendations to inform the Food and Drug Administration's consideration of investigational new drug applications.
Book Synopsis Mackenzie's Mission by : Rachael Casella
Download or read book Mackenzie's Mission written by Rachael Casella and published by Allen & Unwin. This book was released on 2020-06-02 with total page 335 pages. Available in PDF, EPUB and Kindle. Book excerpt: A story of triumph over adversity, the strength that can be found in love and kindness, and the power of one couple to effect positive change in the world. 'A true love story' - Mia Freedman, founder of Mamamia Rachael and Jonathan were thrilled to welcome their baby Mackenzie into the world and to start their new lives as parents. Little did they know that in a few months they would be tested to endurance and beyond. Like many other couples starting a family, Rachael and Jonathan had no idea they were both carriers for a genetic disease, and that 1 in 20 babies are affected by genetic birth defects. Their daughter was one of those babies, and Mackenzie's Mission is Rachael's beautiful and heartwarming account of Mackenzie's life, child loss, and a journey through IVF. Determined that other couples should not go through the same heartbreak, Rachael and Jonathan are now champions for genetic testing. This is a story of triumph over adversity, the strength that can be found in kindness and the power of one couple to effect positive change in the world. 'Heartbreaking and inspiring. A must read for anyone who's lost a child, loved a child, or is desperately trying to for a child. You will cry but you will also find comfort in this incredible story.' - Erin Molan, sports presenter, Nine Network 'A book about grief and finding purpose through unimaginable loss and heartbreak. Beautiful Mackenzie will continue to have a powerful impact on this world through the work of her remarkable parents.' - Libby Trickett, Olympic swimming gold medallist and author of Beneath the Surface 'The most extraordinary story of a mother's love and her daughter's legacy.' - Marcia Leone, creator of Not So Mumsy
Book Synopsis The Science of Citizen Science by : Katrin Vohland
Download or read book The Science of Citizen Science written by Katrin Vohland and published by Springer Nature. This book was released on 2021 with total page 520 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book discusses how the involvement of citizens into scientific endeavors is expected to contribute to solve the big challenges of our time, such as climate change and the loss of biodiversity, growing inequalities within and between societies, and the sustainability turn. The field of citizen science has been growing in recent decades. Many different stakeholders from scientists to citizens and from policy makers to environmental organisations have been involved in its practice. In addition, many scientists also study citizen science as a research approach and as a way for science and society to interact and collaborate. This book provides a representation of the practices as well as scientific and societal outcomes in different disciplines. It reflects the contribution of citizen science to societal development, education, or innovation and provides and overview of the field of actors as well as on tools and guidelines. It serves as an introduction for anyone who wants to get involved in and learn more about the science of citizen science.
