Download or read book Direct to Consumer Genetic Testing written by National Research Council and published by National Academies Press. This book was released on 2011-01-16 with total page 106 pages. Available in PDF, EPUB and Kindle. Book excerpt: Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.
Download or read book Direct to Consumer Genetic Tests Misleading Test Results are Further Complicated by Deceptive Marketing and Other Questionable Practices written by Gregory Kutz and published by DIANE Publishing. This book was released on 2010-11 with total page 33 pages. Available in PDF, EPUB and Kindle. Book excerpt: In 2006, the auditor investigated companies selling direct-to-consumer (DTC) genetic tests and testified that these companies made medically unproven disease predictions. Experts are concerned that the test results mislead consumers. The auditor was asked to investigate DTC genetic tests currently on the market and the advertising methods used to sell these tests. Kutz purchased 10 tests each from four companies, for $299 to $999 per test. He then selected five donors and sent two DNA samples from each donor to each co.: one using factual info. about the donor and one using fictitious info., such as incorrect age and race or ethnicity. The fictitious consumers received test results that are misleading and of little or no practical use. Illus.
Download or read book An Evidence Framework for Genetic Testing written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-04-21 with total page 149 pages. Available in PDF, EPUB and Kindle. Book excerpt: Advances in genetics and genomics are transforming medical practice, resulting in a dramatic growth of genetic testing in the health care system. The rapid development of new technologies, however, has also brought challenges, including the need for rigorous evaluation of the validity and utility of genetic tests, questions regarding the best ways to incorporate them into medical practice, and how to weigh their cost against potential short- and long-term benefits. As the availability of genetic tests increases so do concerns about the achievement of meaningful improvements in clinical outcomes, costs of testing, and the potential for accentuating medical care inequality. Given the rapid pace in the development of genetic tests and new testing technologies, An Evidence Framework for Genetic Testing seeks to advance the development of an adequate evidence base for genetic tests to improve patient care and treatment. Additionally, this report recommends a framework for decision-making regarding the use of genetic tests in clinical care.
Download or read book Understanding Genomic and Hereditary Cancer Risk written by Suzanne M. Mahon and published by . This book was released on 2021 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Collecting a family medical history is a regular component of the nursing assessment process that often includes information on familial cancer diagnoses, and patients may fear that they or their loved ones might be at increased risk for developing cancer because of hereditary factors. Although true inherited risk for developing cancer is much less common than acquired risk for developing cancer, approximately 10% of cancer diagnoses can be attributed to inherited risk. The identification of families exhibiting hereditary cancer syndromes enables individuals at risk to engage in increased surveillance and, in some cases, risk-reducing surgery and other preventive measures, which ultimately lead to decreasing the morbidity and mortality associated with a cancer diagnosis. The role of the nurse in helping patients to understand and manage hereditary cancer risk requires specialized knowledge of genetics and genomics concepts. Understanding Genomic and Hereditary Cancer Risk: A Handbook for Oncology Nurses provides background on basic genetic and genomic concepts, particularly those related to hereditary risk for developing cancer, to aid nurses in knowing when and why to refer patients. It also provides reliable information about how and why genetic and genomic testing can both aid in treatment decisions and also guide recommendations for cancer prevention and early detection. The nurse's role in genetic testing and counseling are discussed, as are questions and answers about types of testing, including direct-to-consumer genetic testing. Following genetic testing, most genetics professionals provide detailed information about recommendations for care, including recommendations for ongoing prevention and early detection. For patients who are found to have a harmful mutation, these recommendations can be extensive and are based on the personal and family medical history, as well as the specific variant. This book provides quick overviews of many of the more common hereditary variants as well as resources for more information. This handbook provides nurses with the essentials to understand genomic and hereditary cancer risk, to assist in facilitating interprofessional care with genetics and other oncology professionals, and to provide their patients with accurate and reassuring information"--
Download or read book CyberGenetics written by Anna Harris and published by Routledge. This book was released on 2016-04-28 with total page 176 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Am I My Genes written by Robert Klitzman and published by OUP USA. This book was released on 2012-03 with total page 376 pages. Available in PDF, EPUB and Kindle. Book excerpt: In this volume, the psychiatrist Robert Klitzman explores how individuals confront the complex issues associated with genetic testing in their daily lives.
Download or read book Toward Precision Medicine written by National Research Council and published by National Academies Press. This book was released on 2012-01-16 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Healthcare and Big Data Management written by Bairong Shen and published by Springer. This book was released on 2017-10-20 with total page 164 pages. Available in PDF, EPUB and Kindle. Book excerpt: The book addresses the interplay of healthcare and big data management. Thanks to major advances in big data technologies and precision medicine, healthcare is now becoming the new frontier for both scientific research and economic development. This volume covers a range of aspects, including: big data management for healthcare; physiological and gut microbiota – data collection and analysis; big data standardization and ontology; and personal data privacy and systems level modeling in the healthcare context. The book offers a valuable resource for biomedical informaticians, clinicians, health practitioners and researchers alike.
Download or read book Principles and Practice of Screening for Disease written by J. M. G. Wilson and published by . This book was released on 1968 with total page 163 pages. Available in PDF, EPUB and Kindle. Book excerpt: The basic principles of early disease detection, practical considerations, including the application of screening procedures in a number of different disease conditions, and, finally, present techniques and possible developments in methodology. Screening for the chronic non-communicable diseases prevalent in the more advanced countries froms the main subject of the report, but the problems facing countries at other stages of development and with different standards and types of medical care are also discussed, and because of this communicable disease detection is also dealth with to some extent.
Download or read book Pediatric Epidemiology written by W. Kiess and published by Karger Medical and Scientific Publishers. This book was released on 2017-11-27 with total page 156 pages. Available in PDF, EPUB and Kindle. Book excerpt: Pediatric epidemiology differs substantially from general epidemiology especially when it comes to ethical, developmental and societal aspects. This unique book addresses biological considerations and ethical and legal questions in dealing with pediatric and adolescent populations. Classic topics, such as how to recruit representative samples, how to deal with confounding variables, and how to work with genetic information are the core areas of the book are also in focus. Last but not the least, this volume adds to the current understanding of global trends in occurrence, transmission, and control of epidemic pediatric diseases. This book not only serves as a textbook for epidemiologists, pediatricians, geneticists, and child and public health specialists but is also a key reference for those embarking on pediatric cohort studies and epidemiological studies involving the pediatric population.
Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.
Download or read book Direct To Consumer Genetic Testing written by Forum on Drug Discovery and published by . This book was released on 2010-12-16 with total page 106 pages. Available in PDF, EPUB and Kindle. Book excerpt: Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.
Download or read book The Lost Family written by Libby Copeland and published by Abrams. This book was released on 2020-03-03 with total page 196 pages. Available in PDF, EPUB and Kindle. Book excerpt: “A fascinating exploration of the mysteries ignited by DNA genealogy testing—from the intensely personal and concrete to the existential and unsolvable.” —Tana French, New York Times–bestselling author You swab your cheek or spit in a vial, then send it away to a lab somewhere. Weeks later you get a report that might tell you where your ancestors came from or if you carry certain genetic risks. Or, the report could reveal a long-buried family secret that upends your entire sense of identity. Soon a lark becomes an obsession, a relentless drive to find answers to questions at the core of your being, like “Who am I?” and “Where did I come from?” Welcome to the age of home genetic testing. In The Lost Family, journalist Libby Copeland investigates what happens when we embark on a vast social experiment with little understanding of the ramifications. She explores the culture of genealogy buffs, the science of DNA, and the business of companies like Ancestry and 23andMe, all while tracing the story of one woman, her unusual results, and a relentless methodical drive for answers that becomes a thoroughly modern genetic detective story. Gripping and masterfully told, The Lost Family is a spectacular book on a big, timely subject. “An urgently necessary, powerful book that addresses one of the most complex social and bioethical issues of our time.” —Dani Shapiro, New York Times–bestselling author “Before you spit in that vial, read this book.” —The New York Times Book Review “Impeccably researched . . . up-to-the-minute science meets the philosophy of identity in a poignant, engaging debut.” —Kirkus Reviews (starred review)
Download or read book The Social Life of DNA written by Alondra Nelson and published by Beacon Press. This book was released on 2016-09-20 with total page 218 pages. Available in PDF, EPUB and Kindle. Book excerpt: The unexpected story of how genetic testing is affecting race in America We know DNA is a master key that unlocks medical and forensic secrets, but its genealogical life is both revelatory and endlessly fascinating. Tracing genealogy is now the second-most popular hobby amongst Americans, as well as the second-most visited online category. This billion-dollar industry has spawned popular television shows, websites, and Internet communities, and a booming heritage tourism circuit. The tsunami of interest in genetic ancestry tracing from the African American community has been especially overwhelming. In The Social Life of DNA, Alondra Nelson takes us on an unprecedented journey into how the double helix has wound its way into the heart of the most urgent contemporary social issues around race. For over a decade, Nelson has deeply studied this phenomenon. Artfully weaving together keenly observed interactions with root-seekers alongside illuminating historical details and revealing personal narrative, she shows that genetic genealogy is a new tool for addressing old and enduring issues. In The Social Life of DNA, she explains how these cutting-edge DNA-based techniques are being used in myriad ways, including grappling with the unfinished business of slavery: to foster reconciliation, to establish ties with African ancestral homelands, to rethink and sometimes alter citizenship, and to make legal claims for slavery reparations specifically based on ancestry. Nelson incisively shows that DNA is a portal to the past that yields insight for the present and future, shining a light on social traumas and historical injustices that still resonate today. Science can be a crucial ally to activism to spur social change and transform twenty-first-century racial politics. But Nelson warns her readers to be discerning: for the social repair we seek can’t be found in even the most sophisticated science. Engrossing and highly original, The Social Life of DNA is a must-read for anyone interested in race, science, history and how our reckoning with the past may help us to chart a more just course for tomorrow.
Download or read book Genetic Testing and the Governance of Risk in the Contemporary Economy written by Lara Khoury and published by Springer Nature. This book was released on 2020-10-01 with total page 354 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.
Download or read book Direct to consumer Genetic Testing and the Consequences to the Public Health written by United States. Congress. House. Committee on Energy and Commerce. Subcommittee on Oversight and Investigations and published by . This book was released on 2013 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book DNA Nation written by Sergio Pistoi and published by Crux Publishing Ltd. This book was released on 2019-10-20 with total page 230 pages. Available in PDF, EPUB and Kindle. Book excerpt: "An indispensable resource for understanding the complex world of over-the-counter genetic testing ... the impressive book explores territory that is both easy to understand and enlightening." --Kirkus Review "Highly important, life-changing and delightfully written...[Pistoi] is pulling the rug out from under many of our preconceptions...with continuous wit and humor. A book which indeed demands to be savored." --Paul Levinson, author of The Silk Code and The Plot to Save Socrates “DNA Nation is a highly readable, scientifically accurate, guide to the brave new world of consumer genetic testing. A must for anyone intrigued by ancestry, health, and the grand variety of humankind”. --Ricki Lewis, author of Human Genetics and The Forever Fix “An enjoyable foray into the medical, legal and ethical aspects of the ongoing genetic revolution…a fun and important read guided by one of the nation's most gifted science writers.” --Jacob M. Appel, author of Who Says You're Dead Millions of people have done it: with a few clicks and some spit, and at less than the cost of a fancy dinner, you can buy a reading of your DNA online. With this in hand, you can find out where you came from, trace relatives around the world and find new friends on a genetic social network. You can learn about your predisposition to disease, get a genetically tailored diet, understand the sports to which you or your children might be more suited, and even find a date. It’s the dawn of consumer genomics, where the progress of biology meets the power of the Internet and big data. But do these applications work? Can we really prevent diseases based on what we read in our DNA? What do scientists say? And do we really understand the implications? What happens if things go wrong and the data is misused or the trust abused? Sergio Pistoi, a journalist and a DNA scientist, investigated this brave new world first-hand by interrogating his own genes, and has provided a practical, informative and thought-provoking survival guide to home genetic testing. From medicine to food, from social networking to genealogy and advertising, this book will show you how the DNA revolution is beginning to have such a profound impact on our daily lives and privacy and why it will influence the choices we make. If you are interested in how social media meets cutting-edge science, and what it means for your life, or if you are considering buying a DNA test, then this is the book for you.
