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Author: Irmgard Nippert
Publisher: Springer Science & Business Media
ISBN: 3642584861
Category : Medical
Languages : en
Pages : 168
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Book Description
ciples and recommendations on genetic service provision in a multidisciplinary way. At the workshop the main issues and principles that are presently emerging as integral parts of national and international recommendations on genetic service provision such as: - voluntary provision of services - protection of choices - patient autonomy - informed consent - nondirective counseling - confidentiality were discussed and the participants tried to assess how these principles are known, met or violated in practice according to the newest up-to-date research findings and to identify existing gaps in data provision, research and policy analy sis. The workshop brought together an international multidisciplinary group of well known experts including health professionals, molecular biologists, social scientists and ethicists as well as representatives of patient organizations and pol icy makers who presented and discussed the newest data and survey findings on selected ethical and social issues in the provision of new genetic tests. The main scientific contributors to this meeting have been awarded grants from ELSI, ESLA, BIOMED 1 and BIOMED 2 programs as well as national grants.
Author: Irmgard Nippert
Publisher: Springer Science & Business Media
ISBN: 3642584861
Category : Medical
Languages : en
Pages : 168
Get Book Here
Book Description
ciples and recommendations on genetic service provision in a multidisciplinary way. At the workshop the main issues and principles that are presently emerging as integral parts of national and international recommendations on genetic service provision such as: - voluntary provision of services - protection of choices - patient autonomy - informed consent - nondirective counseling - confidentiality were discussed and the participants tried to assess how these principles are known, met or violated in practice according to the newest up-to-date research findings and to identify existing gaps in data provision, research and policy analy sis. The workshop brought together an international multidisciplinary group of well known experts including health professionals, molecular biologists, social scientists and ethicists as well as representatives of patient organizations and pol icy makers who presented and discussed the newest data and survey findings on selected ethical and social issues in the provision of new genetic tests. The main scientific contributors to this meeting have been awarded grants from ELSI, ESLA, BIOMED 1 and BIOMED 2 programs as well as national grants.
Author: Anna Harris
Publisher: Routledge
ISBN: 1317368185
Category : Social Science
Languages : en
Pages : 176
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Book Description
Online genetic testing services are increasingly being offered to consumers who are becoming exposed to, and knowledgeable about, new kinds of genetic technologies, as the launch of a 23andme genetic testing product in the UK testifies. Genetic research breakthroughs, cheek swabbing forensic pathologists and celebrities discovering their ancestral roots are littered throughout the North American, European and Australasian media landscapes. Genetic testing is now capturing the attention, and imagination, of hundreds of thousands of people who can not only buy genetic tests online, but can also go online to find relatives, share their results with strangers, sign up for personal DNA-based musical scores, and take part in research. This book critically examines this market of direct-to-consumer (DTC) genetic testing from a social science perspective, asking, what happens when genetics goes online? With a focus on genetic testing for disease, the book is about the new social arrangements which emerge when a traditionally clinical practice (genetic testing) is taken into new spaces (the internet). It examines the intersections of new genetics and new media by drawing from three different fields: internet studies; the sociology of health; and science and technology studies. While there has been a surge of research activity concerning DTC genetic testing, particularly in sociology, ethics and law, this is the first scholarly monograph on the topic, and the first book which brings together the social study of genetics and the social study of digital technologies. This book thus not only offers a new overview of this field, but also offers a unique contribution by attending to the digital, and by drawing upon empirical examples from our own research of DTC genetic testing websites (using online methods) and in-depth interviews in the United Kingdom with people using healthcare services.
Author: National Research Council
Publisher: National Academies Press
ISBN: 0309222222
Category : Medical
Languages : en
Pages : 142
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Book Description
Motivated by the explosion of molecular data on humans-particularly data associated with individual patients-and the sense that there are large, as-yet-untapped opportunities to use this data to improve health outcomes, Toward Precision Medicine explores the feasibility and need for "a new taxonomy of human disease based on molecular biology" and develops a potential framework for creating one. The book says that a new data network that integrates emerging research on the molecular makeup of diseases with clinical data on individual patients could drive the development of a more accurate classification of diseases and ultimately enhance diagnosis and treatment. The "new taxonomy" that emerges would define diseases by their underlying molecular causes and other factors in addition to their traditional physical signs and symptoms. The book adds that the new data network could also improve biomedical research by enabling scientists to access patients' information during treatment while still protecting their rights. This would allow the marriage of molecular research and clinical data at the point of care, as opposed to research information continuing to reside primarily in academia. Toward Precision Medicine notes that moving toward individualized medicine requires that researchers and health care providers have access to very large sets of health- and disease-related data linked to individual patients. These data are also critical for developing the information commons, the knowledge network of disease, and ultimately the new taxonomy.
Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309101964
Category : Social Science
Languages : en
Pages : 385
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Book Description
Over the past century, we have made great strides in reducing rates of disease and enhancing people's general health. Public health measures such as sanitation, improved hygiene, and vaccines; reduced hazards in the workplace; new drugs and clinical procedures; and, more recently, a growing understanding of the human genome have each played a role in extending the duration and raising the quality of human life. But research conducted over the past few decades shows us that this progress, much of which was based on investigating one causative factor at a time—often, through a single discipline or by a narrow range of practitioners—can only go so far. Genes, Behavior, and the Social Environment examines a number of well-described gene-environment interactions, reviews the state of the science in researching such interactions, and recommends priorities not only for research itself but also for its workforce, resource, and infrastructural needs.
Author: Robin Bunton
Publisher: Routledge
ISBN: 1134598114
Category : Social Science
Languages : en
Pages : 272
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Book Description
The rapid advancement of genetic science, fuelled by the Human Genome Project and other related initiatives, promises a new kind of public health practice based on the pre-detection of disease according to calculations of genetic risk. This book by two well-known sociologists: * explores the implications of the new genetics for public health as a body of knowledge and a domain of practice * assesses the impact of new genetic information and technologies on conceptions of health, illness, embodiment, self and citizenship * critically examines the complex discourses surrounding human genetics and public health. The New Genetics and The Public's Health addresses the emerging social and political consequences of the new genetics and provides a stimulating critique of current research and practice in public health.
Author: Godfrey Grech
Publisher: Springer
ISBN: 3319153447
Category : Science
Languages : en
Pages : 388
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Book Description
Pharmacogenomics supports personalized medicine by translating genome-based knowledge into clinical practice, offering enhanced benefit for patients and health-care systems at large. Current routine practice for diagnosing and treating patients is conducted by correlating parameters such as age, gender and weight with risks and expected treatment outcomes. In the new era of personalized medicine the healthcare provider is equipped with improved ability to prevent, diagnose, treat and predict outcomes on the basis of complex information sources, including genetic and genomic data. Targeted therapy and reliable prediction of expected outcomes offer patients access to better healthcare management, by way of identifying the therapies effective for the relevant patient group, avoiding prescription of unnecessary treatment and reducing the likelihood of developing adverse drug reactions.
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
ISBN: 0309485258
Category : Medical
Languages : en
Pages : 127
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Book Description
Genomic medicine is defined as the routine use of genomic information about an individual as part of his or her clinical care as well as the health outcomes and policy implications of that clinical use. It is one approach that has the potential to improve the quality of health care by allowing practitioners to tailor prevention, diagnostic, and treatment strategies to individual patients. In recent years, research breakthroughs, technological advances, and the decreasing cost of DNA sequencing have led to the wider adoption of genomic medicine. However, as with the introduction of new technologies into health care, there are concerns that genetic and genomic testing and services will not reach all segments of the population both now and in the near future, and there remains a gap in knowledge regarding potential health care disparities in genomic medicine and precision health approaches. On June 27, 2018, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to examine the gaps in knowledge related to access to genomic medicine and to discuss health care disparities and possible approaches to overcoming the disparate use of genomic medicine among populations. Workshop participants discussed research on access to genetics and genomics services in medically underserved areas, model programs of care for diverse patient populations, and current challenges and possible best practices for alleviating health care disparities as they relate to genomics-based approaches. This publication summarizes the presentations and discussions from the workshop.
Author: Kaja Finkler
Publisher: University of Pennsylvania Press
ISBN: 0812200608
Category : Social Science
Languages : en
Pages : 292
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Book Description
Over the past several decades there has been an explosion of interest in genetics and genetic inheritance within both the research community and the mass media. The science of genetics now forecasts great advances in alleviating disease and prolonging human life, placing the family and kin group under the spotlight. In Experiencing the New Genetics, Kaja Finkler argues that the often uncritical presentation of research on genetic inheritance as well as the attitudes of some in the biomedical establishment contribute to a "genetic essentialism," a new genetic determinism, and the medicalization of kinship in American society. She explores some of the social and cultural consequences of this phenomenon. Finkler discovers that the new genetics can turn a healthy person into a perpetual patient, complicate the redefinition of the family that has been occurring in American society for the past few decades, and lead to the abdication of responsibility for addressing the problem of unhealthy environmental conditions. Experiencing the New Genetics will assist scholars and general readers alike in making sense of this timely and multifaceted issue.
Author: Thomas H. Murray
Publisher: Indiana University Press
ISBN: 9780253113252
Category : Medical
Languages : en
Pages : 266
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Book Description
"The volume deserves our serious attention. The authors have provided us an invaluable primer about the HGP and its implications for the future of American health care." -- Jurimetrics "This book does make a real contribution... in explaining why the genetics revolution holds so much promise and why it is so difficult to bring that promise to fruition." -- The Journal of Legal Medicine "... marked by a forward-looking, analytically and empirically grounded thematic coherence. The editors' carefully crafted template and contributions successfully focus and organize the material." -- Annals of Internal Medicine "Excellent" -- Canadian Medical Association Journal "The editors have done a very good job integrating the contents into a very useful and readable information source." -- Choice "... this highly focused book is a well-written, thoughtful, and insightful consideration of the HGP and is valuable reading for anyone concerned with the future of our country's medical infrastructure." -- Science Books & Films (**Highly recommended) "A distinguished group of scientists, lawyers, and scholars have written a coherent, readable account of the legal, medical, ethical, and policy issues many (if not all) of us will be wrestling with on both a personal and a public level, as a result of current genetic research." -- Library Journal "Each of the contributors is a distinguished authority on the topic. Ethicists, especially, will find well-developed presentation of issues, with exposition of the differing ethical assumptions in tension in the society debate." -- Doody's Health Sciences Book Review Home Page How will the science of gene mapping and gene manipulation affect health care? Leading scholars explore the clinical, ethical, legal, and policy implications of the Human Genome Project for the forms of health care, who delivers it, who receives it, and who pays for it.
Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309124999
Category : Computers
Languages : en
Pages : 334
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Book Description
In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.
