Direct To Consumer Genetic Testing
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Interpreting Direct To Consumer Genetic Tests In The Public Health System
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Author : Carla Beak
language : en
Publisher:
Release Date : 2012
Interpreting Direct To Consumer Genetic Tests In The Public Health System written by Carla Beak and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012 with Genetic counseling categories.
Direct-to-consumer (DTC) genetic testing poses a growing problem in the field of health policy. Consumers who purchase the tests often do not have the knowledge required to interpret the tests and make informed decisions related to their care. They then turn to health care providers to interpret test results, many who also have limited knowledge of genetics. This may lead to decisions regarding further testing, treatment and referrals that do not benefit the patient and waste health care resources. Using interviews of stakeholders in the fields of health, genetics, education and ethics, I performed a thematic analysis to identify the key issues facing the health system in relation to DTC genetic testing. I then identified policy options available to the health system to aid physician decision-making. I evaluated the tradeoffs between the two most feasible policy options: promoting the Medical Genetics P&P telephone support line, and expanding HealthLink BC.
Direct To Consumer Genetic Testing
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Author : National Research Council
language : en
Publisher: National Academies Press
Release Date : 2011-01-16
Direct To Consumer Genetic Testing written by National Research Council and has been published by National Academies Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2011-01-16 with Medical categories.
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.
Direct To Consumer Genetic Testing
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Author : Forum on Drug Discovery
language : en
Publisher:
Release Date : 2010-12-16
Direct To Consumer Genetic Testing written by Forum on Drug Discovery and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2010-12-16 with categories.
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.
Direct To Consumer Genetic Testing
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Author : Albert Blankley
language : en
Publisher:
Release Date : 2013
Direct To Consumer Genetic Testing written by Albert Blankley and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2013 with Genetic screening categories.
"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.
Direct To Consumer Genetic Tests
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Author : Trevor Hecht
language : en
Publisher:
Release Date : 2012
Direct To Consumer Genetic Tests written by Trevor Hecht and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2012 with Genetic screening categories.
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.
Direct To Consumer Genetic Testing
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Author : Stephanie Plamondon Bair
language : en
Publisher:
Release Date : 2015
Direct To Consumer Genetic Testing written by Stephanie Plamondon Bair and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2015 with categories.
A decade after the complete sequencing of the human genome, we have seen a proliferation of genetic testing services marketed directly to the consumer and purporting to use genetic information to generate individualized health information. These tests have been subject to only minimal regulation, despite the fact that scientists and policymakers have serious concerns about both the clinical effectiveness of the tests and the safety of releasing certain types of health information to the public without the supervision of a health care professional. Proponents of minimal regulation argue that the tests allow for patient autonomy and privacy of genetic information, while unburdened marketing of the tests encourages increased development and innovation of testing services. This article explores in depth both the benefits of direct to consumer genetic testing and the concerns arising from such tests, and concludes that particular safety and accuracy concerns warrant increased oversight of these tests. The article then goes on to evaluate the current regulatory framework under which direct to consumer genetic testing services operate, and finds that it is insufficient in light of these concerns. The article concludes that recent steps by the Food and Drug Administration (FDA) to exercise increased regulation over direct to consumer genetic tests are warranted and will provide the optimal amount of regulation for these tests.
Cybergenetics
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Author : Anna Harris
language : en
Publisher: Routledge
Release Date : 2016-04-28
Cybergenetics written by Anna Harris and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2016-04-28 with Social Science categories.
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.
Exploring The Current Landscape Of Consumer Genomics
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Author : National Academies of Sciences, Engineering, and Medicine
language : en
Publisher: National Academies Press
Release Date : 2020-07-23
Exploring The Current Landscape Of Consumer Genomics written by National Academies of Sciences, Engineering, and Medicine and has been published by National Academies Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2020-07-23 with Medical categories.
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.
Media Coverage Of Direct To Consumer Genetic Testing
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Author : Ashley Parrott
language : en
Publisher:
Release Date : 2010
Media Coverage Of Direct To Consumer Genetic Testing written by Ashley Parrott and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2010 with categories.
News media have played a major role in shaping public opinion of scientific developments. Direct-to-Consumer (DTC) genetic testing is a relatively new scientific development gaining attention. A better understanding of media coverage, especially the attitudes and ethical concerns found there, may allow for better understanding of public and consumer attitudes and behavior regarding DTC genetic testing. The purpose of this study was to determine the themes, attitudes, and ethical concerns that are presented by the U.S. news media regarding DTC genetic testing. We identified a sample of 93 news stories published from 2006 to 2009 in print, broadcast and online media using a Lexis-Nexis search with the keywords "Direct-to-Consumer" and "genetic test". The sample was coded for the attitudes about themes of genetic determinism, analytical and clinical validity, regulation, clinical utility, and cost as well as for the ethical concerns of privacy, discrimination, and the Genetic Information Nondiscrimination Act (GINA). Of news stories that addressed the theme, the majority displayed moderate genetic determinism and were neutral in their view of validity and clinical utility. Stories indicated that insurance and employers were the likely sources of potential discrimination, yet identified the medical record/physicians and DTC companies as the sources most likely to violate the privacy of individual medical information. Stories claimed that a lack of regulation would harm consumers, but the majority of post-GINA stories made no mention of the law or the protections it provided. Attitudes on the cost of DTC genetic tests were rarely provided, although cost figures frequently were included. The results show a broad range of attitudes toward DTC genetic testing and its potential medical and social impacts. The way in which news media presents issues surrounding DTC genetic testing may influence opinion and utilization of those tests. The genetic community should be aware that the public has been exposed to multiple views of DTC genetic testing when discussing these tests with individuals.
Direct To Consumer Genetic Testing And The Consequences To The Public Health
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Author : United States. Congress. House. Committee on Energy and Commerce. Subcommittee on Oversight and Investigations
language : en
Publisher:
Release Date : 2013
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 has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2013 with Direct-to-consumer medical device advertising categories.