The ethics and challenges of studying the genetics of marginalized populations PDF Download

Author: Arslan A. Zaidi
Publisher: Frontiers Media SA
ISBN: 2832534244
Category : Science
Languages : en
Pages : 83

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Author: Wibhu Kutanan
Publisher: Frontiers Media SA
ISBN: 2889764702
Category : Science
Languages : en
Pages : 201

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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.

Author: Ezekiel J. Emanuel
Publisher: OUP USA
ISBN: 0199768633
Category : Medical
Languages : en
Pages : 848

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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
ISBN: 1473959306
Category : Reference
Languages : en
Pages : 685

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This best-selling handbook has been brought fully up-to-date with coverage of recent developments in the field including social media, big data, data visualization and CAQDAS.

Author: The Royal Society
Publisher: National Academies Press
ISBN: 0309671132
Category : Medical
Languages : en
Pages : 239

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Book Description
Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.

Author: Rebecca Skloot
Publisher: Crown
ISBN: 0307589382
Category : Science
Languages : en
Pages : 386

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#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: 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.

Author: M. Therese Lysaught
Publisher: Liturgical Press
ISBN: 0814684793
Category : Medical
Languages : en
Pages : 464

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Book Description
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.

Author: Contreras, Jorge L.
Publisher: Edward Elgar Publishing
ISBN: 183910595X
Category : Law
Languages : en
Pages : 328

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Book Description
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.