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 Consumer Genetic Technologies written by I. Glenn Cohen and published by Cambridge University Press. This book was released on 2021-09-16 with total page 303 pages. Available in PDF, EPUB and Kindle. Book excerpt: Examines the ethical, legal, and regulatory challenges presented as genomics become commonplace, easily available consumer products.

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 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 CyberGenetics written by Anna Harris and published by Routledge. This book was released on 2016-04-28 with total page 253 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 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 Legal and Forensic Medicine written by Roy G. Beran and published by Springer. This book was released on 2013-09-05 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: This is a comprehensive reference text that examines the current state of Legal Medicine, which encompasses Forensic Medicine, in the 21st century. It examines the scope of both legal and forensic medicine, its application and study and has adopted a wide ranging approach including multinational authorship. It reviews the differences between and similarities of forensic and legal medicine, the need for academic qualification, the applications to many and varied fields including international aid, military medicine, health law and the application of medical knowledge to both criminal law and tort/civil law, sports medicine and law, gender and age related factors from obstetrics through to geriatrics and palliative care as well as cultural differences exploring the Christian/Judeo approach compared with that within Islamic cultures, Buddhism and Hinduism. The book looks at practical applications of legal medicine within various international and intercultural frameworks. This is a seminal authoritative text in legal and forensic medicine. It has a multi-author and multinational approach which crosses national boundaries. There is a great interest in the development of health law and legal medicine institutes around the world and this text comes in on the ground floor of this burgeoning discipline and provides the foundation text for many courses, both undergraduate and postgraduate. It defines the place of legal medicine as a specialized discipline.​

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 Genetics as Social Practice written by Dr Barbara Prainsack and published by Ashgate Publishing, Ltd.. This book was released on 2014-03-28 with total page 241 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recent debate about the ethical and regulatory dimensions of developments in genetics has sidelined societal and cultural aspects, which arguably are indispensable for a nuanced understanding of the complexities of the topic. Regulatory and ethical debates benefit from taking seriously this ‘third dimension’ of culture, which often determines the configurations and limits of the space within which scientific, ethical and legal debate can take place. To fill this gap, this volume brings together contributions exploring the mutual relationships between genetics, markets, societies and identities in genetics and genomics. It draws upon the recent transdisciplinary debate on how socio-cultural factors influence understandings of ‘genetics2.0' and shows how individual and collective identities are challenged or reinforced by cultural meanings and practices of genetics. This book will become a standard reference for everyone seeking to make sense of the controversies and shifts in the field of genetics in the second decade of the twenty-first century.

Download or read book Beyond the HIPAA Privacy Rule written by Institute of Medicine and published by National Academies Press. This book was released on 2009-03-24 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

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 165 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 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 Am I My Genes written by Robert L. Klitzman M.D. and published by Oxford University Press. This book was released on 2012-03-01 with total page 376 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center

Download or read book Your DNA Guide the Book written by Diahan Southard and published by . This book was released on 2020-02-26 with total page 250 pages. Available in PDF, EPUB and Kindle. Book excerpt: You don't have to learn everything about genetic genealogy before asking specific questions of your DNA! That's the premise of Diahan Southard's brand new book, Your DNA Guide - the Book, now available for pre-order at a special sale price. Your DNA Guide - the Book is like no other genetic genealogy book on the market. Instead of learning more-than-you-need-to-know in textbook style, you'll choose a specific DNA question to start exploring right away. You'll follow concrete step-by-step plans, learning important DNA concepts--in plain English--as you go. Do you want to learn who your 2X great grandmother is? Turn to page 23. Do you want to know how you are related to one of your DNA matches? Page 37. As you proceed, you check your progress and get new guidance based on your specific results at each stage. (Including troubleshooting, like when your matches just aren't responding or your great-grandparents turn out to be first cousins.) This powerful, hands-on approach is based on Diahan's 20 years of experience in the genetic genealogy industry and especially in the past five years, as she helps clients one-on-one make DNA discoveries. It became clear to her that while each client's situation may be unique, there are patterns in how you can find solutions that you can apply yourself. Your DNA Guide - the Book is for anyone who has taken a DNA test or may want to. It helps genealogists reconstruct family trees. It helps adoptees identify biological relatives. It can help you identify a specific DNA match. In short, it helps anyone explore what their DNA--and their DNA matches--can tell them about their origins.

Download or read book Making Sense of Genes written by Kostas Kampourakis and published by Cambridge University Press. This book was released on 2017-03-30 with total page 319 pages. Available in PDF, EPUB and Kindle. Book excerpt: What are genes? What do genes do? These seemingly simple questions are in fact challenging to answer accurately. As a result, there are widespread misunderstandings and over-simplistic answers, which lead to common conceptions widely portrayed in the media, such as the existence of a gene 'for' a particular characteristic or disease. In reality, the DNA we inherit interacts continuously with the environment and functions differently as we age. What our parents hand down to us is just the beginning of our life story. This comprehensive book analyses and explains the gene concept, combining philosophical, historical, psychological and educational perspectives with current research in genetics and genomics. It summarises what we currently know and do not know about genes and the potential impact of genetics on all our lives. Making Sense of Genes is an accessible but rigorous introduction to contemporary genetics concepts for non-experts, undergraduate students, teachers and healthcare professionals.

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 Privacy Issues in Biomedical and Clinical Research written by Board on Biology and published by National Academies Press. This book was released on 1998-11-24 with total page 59 pages. Available in PDF, EPUB and Kindle. Book excerpt: After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.