[PDF] Direct To Consumer Genetic Testing eBook

Author : National Research Council
Publisher : National Academies Press
Page : 106 pages
File Size : 16,50 MB
Release : 2011-01-16
Category : Medical
ISBN : 0309162165

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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.

Author : I. Glenn Cohen
Publisher : Cambridge University Press
Page : 303 pages
File Size : 37,25 MB
Release : 2021-09-16
Category : Law
ISBN : 1108836615

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Examines the ethical, legal, and regulatory challenges presented as genomics become commonplace, easily available consumer products.

Author : Gregory Kutz
Publisher : DIANE Publishing
Page : 33 pages
File Size : 25,37 MB
Release : 2010-11
Category :
ISBN : 143793658X

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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.

Author : Suzanne M. Mahon
Publisher :
Page : pages
File Size : 23,28 MB
Release : 2021
Category :
ISBN : 9781635930504

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"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"--

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
Page : 149 pages
File Size : 11,68 MB
Release : 2017-04-21
Category : Medical
ISBN : 0309453291

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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.

Author : Anna Harris
Publisher : Routledge
Page : 176 pages
File Size : 50,19 MB
Release : 2016-04-28
Category : Social Science
ISBN : 1317368185

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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 : Robert L. Klitzman M.D.
Publisher : Oxford University Press
Page : 376 pages
File Size : 38,45 MB
Release : 2012-03-01
Category : Medical
ISBN : 0190207671

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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

Author : Albert Blankley
Publisher :
Page : 108 pages
File Size : 20,75 MB
Release : 2013
Category : Genetic screening
ISBN :

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"New technology presents difficulties for policy makers in that it is impossible to determine every subsequent impact of a novel technology when it is introduced to society. Direct-to-consumer (DTC) genetic testing exemplifies this problem while presenting the additional complication of having an impact on both individual and public health. Little research has been done on what consumer perceptions of information presented to them are. Some studies have demonstrated a need for further work and expert consensus has identified issues with advertisements but no research has been done on consumer perceptions. A cohort of faculty and staff at the Rochester Institute of Technology (RIT) were presented with a screenshot of a website from a leader in the DTC genetic testing industry and asked about their perceptions of the genetic tests presented on that page. The survey was distributed via email and presented using RIT Clipboard software. 103 responses to the survey were received and analyzed. There was a wide range in the answers provided to questions but several themes emerged upon analysis. This population was significantly more educated than the general U.S. population. Many respondents indicated some form of knowledge in science and or technology, either through formal education or work experience. The responses indicated a significant lack of understanding of the information presented by the company. Some respondents demonstrated a misunderstanding of the basic concepts underlying the information presented and a failure to correctly interpret the advertisement. These results indicate a potential need for policies regarding the structure, content and interpretation of these advertisements. Further research should focus on establishing similar results for other genetic tests and DTC genetic testing companies as well as developing methodologies to assess retention of information and economic and political acceptance of potential regulation."--Abstract.

Author : Trevor Hecht
Publisher :
Page : 0 pages
File Size : 27,4 MB
Release : 2012
Category : Genetic screening
ISBN : 9781619421752

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In 2006, the Government Accountability Office (GAO) investigated companies selling direct-to-consumer (DTC) genetic tests and testified that these companies made medically unproven disease predictions. Although new companies have since been touted as being more reputable, experts remain concerned that the test results mislead consumers. This book examines the genetic tests currently on the market; the misleading test results themselves; the deceptive marketing techniques utilized; and other questionable practices.

Author : Bairong Shen
Publisher : Springer
Page : 165 pages
File Size : 23,56 MB
Release : 2017-10-20
Category : Science
ISBN : 981106041X

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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.