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Achieving Justice in Genomic Translation by Wylie Burke,Kelly A. Edwards,Sara Goering,Suzanne Holland,Susan Brown Trinidad Pdf
This book examines ethical and social issues that arise in the conduct of genetic research, from the discovery phase, through development and delivery research, to health outcomes. The authors argue that research at every phase needs to be responsive to community needs to assure public health benefits and reduce, rather than exacerbate, health disparities.
Achieving Justice in Genomic Translation by Wylie Burke MD, PhD,Kelly A. Edwards PhD,Sara Goering PhD,Suzanne Holland PhD,Susan Brown Trinidad MA Pdf
This book explores implicit choices made by researchers, policy makers, and funders regarding who benefits from society's investment in health research. The authors focus specifically on genetic research and examine whether such research tends to reduce or exacerbate existing health disparities. Using case examples to illustrate the issues, the authors trace the path of genetics research from discovery, through development and delivery, to health outcomes. Topics include breast cancer screening and treatment, autism research, pharmacogenetics, prenatal testing, newborn screening, and youth suicide prevention. Each chapter emphasizes the societal context of genetic research and illustrates how science might change if attention were paid to the needs of marginalized populations. Written by experts in genetics, health, and philosophy, this book argues that the scientific enterprise has a responsibility to respond to community needs to assure that research innovations achieve much needed health impacts.
National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations
Author : National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations Publisher : National Academies Press Page : 329 pages File Size : 50,5 Mb Release : 2017-08-13 Category : Medical ISBN : 9780309452885
Human Genome Editing by National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations Pdf
Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.
Genetics, Health, and Society by Brea L. Perry Pdf
This volume focuses on critical issues surrounding the intersection of genetics, health, and society. It provides a critical examination of sociological and biomedical approaches to genomics, including strengths and limitations of each perspective.
Author : Dhavendra Kumar,Charis Eng Publisher : Oxford Monographs on Medical G Page : 853 pages File Size : 53,7 Mb Release : 2014-10-15 Category : Medical ISBN : 9780199896028
The Disability Bioethics Reader by Joel Michael Reynolds,Christine Wieseler Pdf
The Disability Bioethics Reader is the first introduction to the field of bioethics presented through the lens of critical disability studies and the philosophy of disability. Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability. Directly addressing this omission, this volume includes 36 chapters, most appearing here for the first time, that cover key areas pertaining to disability bioethics, such as: state-of-the-field analyses of modern medicine, bioethics, and disability theory health, disease, and the philosophy of medicine issues at the edge- and end-of-life, including physician-aid-in-dying, brain death, and minimally conscious states enhancement and biomedical technology invisible disabilities, chronic pain, and chronic illness implicit bias and epistemic injustice in health care disability, quality of life, and well-being race, disability, and healthcare justice connections between disability theory and aging, trans, and fat studies prenatal testing, abortion, and reproductive justice. The Disability Bioethics Reader, unlike traditional bioethics textbooks, also engages with decades of empirical and theoretical scholarship in disability studies—scholarship that spans the social sciences and humanities—and gives serious consideration to the history of disability activism.
Author : Bruce R. Korf,Mira B. Irons Publisher : John Wiley & Sons Page : 280 pages File Size : 48,6 Mb Release : 2012-11-19 Category : Medical ISBN : 9781118537664
Human Genetics and Genomics by Bruce R. Korf,Mira B. Irons Pdf
This fourth edition of the best-selling textbook, Human Genetics and Genomics, clearly explains the key principles needed by medical and health sciences students, from the basis of molecular genetics, to clinical applications used in the treatment of both rare and common conditions. A newly expanded Part 1, Basic Principles of Human Genetics, focuses on introducing the reader to key concepts such as Mendelian principles, DNA replication and gene expression. Part 2, Genetics and Genomics in Medical Practice, uses case scenarios to help you engage with current genetic practice. Now featuring full-color diagrams, Human Genetics and Genomics has been rigorously updated to reflect today’s genetics teaching, and includes updated discussion of genetic risk assessment, “single gene” disorders and therapeutics. Key learning features include: Clinical snapshots to help relate science to practice ‘Hot topics’ boxes that focus on the latest developments in testing, assessment and treatment ‘Ethical issues’ boxes to prompt further thought and discussion on the implications of genetic developments ‘Sources of information’ boxes to assist with the practicalities of clinical research and information provision Self-assessment review questions in each chapter Accompanied by the Wiley E-Text digital edition (included in the price of the book), Human Genetics and Genomics is also fully supported by a suite of online resources at www.korfgenetics.com, including: Factsheets on 100 genetic disorders, ideal for study and exam preparation Interactive Multiple Choice Questions (MCQs) with feedback on all answers Links to online resources for further study Figures from the book available as PowerPoint slides, ideal for teaching purposes The perfect companion to the genetics component of both problem-based learning and integrated medical courses, Human Genetics and Genomics presents the ideal balance between the bio-molecular basis of genetics and clinical cases, and provides an invaluable overview for anyone wishing to engage with this fast-moving discipline.
National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities
Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities Publisher : National Academies Press Page : 85 pages File Size : 47,9 Mb Release : 2016-09-24 Category : Medical ISBN : 9780309443579
Strategies for Ensuring Diversity, Inclusion, and Meaningful Participation in Clinical Trials by National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Population Health and Public Health Practice,Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities Pdf
Even as the U.S. population becomes steadily more diverse, minorities and women remain underrepresented in clinical trials to develop new drugs and medical devices. Although progress in increasing minority participation in clinical trials has occurred, participation rates do not fully represent the overall population of minorities in the United States. This underrepresentation threatens the health of both these populations and the general population, since greater minority representation could reveal factors that affect health in all populations. Federal legislation has sought to increase the representation of minorities and women in clinical trials, but legislation by itself has not been sufficient to overcome the many barriers to greater participation. Only much broader changes will bring about the meaningful participation of all population groups in the clinical research needed to improve health. To examine the barriers to participation in clinical trials and ways of overcoming those barriers, the National Academies of Sciences, Engineering, and Medicine held a workshop in April 2015. This publication summarizes the presentations and discussions from the workshop.
The Royal Society,National Academy of Sciences,National Academy of Medicine,International Commission on the Clinical Use of Human Germline Genome Editing
Author : The Royal Society,National Academy of Sciences,National Academy of Medicine,International Commission on the Clinical Use of Human Germline Genome Editing Publisher : National Academies Press Page : 239 pages File Size : 40,8 Mb Release : 2021-01-16 Category : Medical ISBN : 9780309671132
Heritable Human Genome Editing by The Royal Society,National Academy of Sciences,National Academy of Medicine,International Commission on the Clinical Use of Human Germline Genome Editing Pdf
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 : Robert C. King,William D. Stansfield Publisher : Oxford University Press, USA Page : 424 pages File Size : 52,6 Mb Release : 1990 Category : Language Arts & Disciplines ISBN : NWU:35558002170518
A Dictionary of Genetics by Robert C. King,William D. Stansfield Pdf
Modern genetics began in 1900 with the rediscovery of Mendel's paper, and now the sequencing of the human genome has brought the first century of progress in this field to a triumphant conclusion. Genetics has entered a new era with the advent of genomic and proteomic approaches, and the knowledge in no other biological discipline is advancing as rapidly as that in molecular genetics and cell biology. Proliferation of new terms inevitably accompanies such exponential growth. The sixth edition of A Dictionary of Genetics addresses the need of students and professionals to have access to an up-to-date reference source that defines not only the most recently coined terms, but in many cases also presents important ancillary encyclopedic information.A Dictionary of Genetics has a broader coverage than its name implies, since it includes definitions of strictly genetic words along with a variety of non-genetic terms often encountered in the literature of genetics. There are about 7,000 definitions, and tables or drawings that illustrate 395 of these. In addition to the main body of the dictionary, this work features new Appendices covering the genomic sizes and gene numbers of about 30 organisms ranging from the smallest known virus to humans, an up-to-date listing of internet addresses for easy access to genetic databanks, and a list of developments, inventions and advances in genetics, cytology, and evolutionary science from the past 400 years. These 900 entries, covering a period from 1590 to 2001, are also cross-referenced in the definitions that occur in the body of the dictionary. No other genetics dictionary supplies definitions cross-referenced to chronology entries or has species entries cross-referenced to an appendix showing the position of each organism in a taxonomic hierarchy. These features make A Dictionary of Genetics the most important lexicon in this field.
In the years since the Human Genome Project, genomics has grown into a big and rapidly developing field driven by bioinformatics technology. The implications for our health and privacy, and our understanding of ecological systems and evolution are profound. This book provides an account of this exciting new science, its impact and its potential.
Medical Genetics provides medical and biomedical students with an understanding of the basic principles of human genetics as they relate to clinical practice, showing how our genome lies at the heart of our health and well-being.
The Genetics of Alcoholism by Henri Begleiter,Benjamin Kissin Pdf
This volume provides an in-depth look at the genetic influences that contribute to the development of alcoholism. Part I: Epidemiologic Studies contains five chapters that examine the various approaches employed in the study of the genetics of alcoholism. It provides a historical perspectiveand details all the essentials of this subject. Part II: Selective Breeding Studies highlights the results of research involving the selective breeding of rodents. This type of research has produced homogenous strains exhibiting specific behavioral responses considered significant in thedevelopment and maintenance of alcohol dependence. The studies presented in Part III: Phenotypic Studies investigate and analyze phenotypic markers that serve as correlates to the genotypic determinants of alcoholism. Through its broad scope, this volume provides for the first time a panoramic viewof the knowledge available on the hereditary influences of alcoholism.
National Research Council,Division on Engineering and Physical Sciences,Committee on Applied and Theoretical Statistics,Policy and Global Affairs,Committee on Science, Technology, and Law,Committee on Identifying the Needs of the Forensic Sciences Community
Author : National Research Council,Division on Engineering and Physical Sciences,Committee on Applied and Theoretical Statistics,Policy and Global Affairs,Committee on Science, Technology, and Law,Committee on Identifying the Needs of the Forensic Sciences Community Publisher : National Academies Press Page : 348 pages File Size : 41,8 Mb Release : 2009-07-29 Category : Law ISBN : 9780309142397
Strengthening Forensic Science in the United States by National Research Council,Division on Engineering and Physical Sciences,Committee on Applied and Theoretical Statistics,Policy and Global Affairs,Committee on Science, Technology, and Law,Committee on Identifying the Needs of the Forensic Sciences Community Pdf
Scores of talented and dedicated people serve the forensic science community, performing vitally important work. However, they are often constrained by lack of adequate resources, sound policies, and national support. It is clear that change and advancements, both systematic and scientific, are needed in a number of forensic science disciplines to ensure the reliability of work, establish enforceable standards, and promote best practices with consistent application. Strengthening Forensic Science in the United States: A Path Forward provides a detailed plan for addressing these needs and suggests the creation of a new government entity, the National Institute of Forensic Science, to establish and enforce standards within the forensic science community. The benefits of improving and regulating the forensic science disciplines are clear: assisting law enforcement officials, enhancing homeland security, and reducing the risk of wrongful conviction and exoneration. Strengthening Forensic Science in the United States gives a full account of what is needed to advance the forensic science disciplines, including upgrading of systems and organizational structures, better training, widespread adoption of uniform and enforceable best practices, and mandatory certification and accreditation programs. While this book provides an essential call-to-action for congress and policy makers, it also serves as a vital tool for law enforcement agencies, criminal prosecutors and attorneys, and forensic science educators.
National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Roundtable on Genomics and Precision Health
Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Roundtable on Genomics and Precision Health Publisher : National Academies Press Page : 113 pages File Size : 42,7 Mb Release : 2020-08-23 Category : Medical ISBN : 9780309673037
Exploring the Current Landscape of Consumer Genomics by National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Sciences Policy,Roundtable on Genomics and Precision Health Pdf
Consumer genomics, encompassing both direct-to-consumer applications (i.e., genetic testing that is accessed by a consumer directly from a commercial company apart from a health care provider) and consumer-driven genetic testing (i.e., genetic testing ordered by a health care provider in response to an informed patient request), has evolved considerably over the past decade, moving from more personal utility-focused applications outside of traditional health care to interfacing with clinical care in nontraditional ways. As consumer genomics has increasingly intersected with clinical applications, discussions have arisen around the need to demonstrate clinical and analytical validity and clinical utility due to the potential for misinterpretation by consumers. Clinical readiness and interest for this information have presented educational and training challenges for providers. At the same time, consumer genomics has emerged as a potentially innovative mechanism for thinking about health literacy and engaging participants in their health and health care. To explore the current landscape of consumer genomics and the implications for how genetic test information is used or may be used in research and clinical care, the Roundtable on Genomics and Precision Health of the National Academies of Sciences, Engineering, and Medicine hosted a public workshop on October 29, 2019, in Washington, DC. Discussions included such topics as the diversity of participant populations, the impact of consumer genomics on health literacy and engagement, knowledge gaps related to the use of consumer genomics in clinical care, and regulatory and health policy issues such as data privacy and security. A broad array of stakeholders took part in the workshop, including genomics and consumer genomics experts, epidemiologists, health disparities researchers, clinicians, users of consumer genomics research applications, representatives from patient advocacy groups, payers, bioethicists, regulators, and policy makers. This publication summarizes the presentations and discussion of the workshop.
