Download or read book The Growth of the Direct To Consumer Genetic Testing Industry and Its Potential Impact on the Future of Healthcare written by Anna Miller and published by . This book was released on 2018 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: An emerging industry in the fields of technology and biology is direct-to-consumer genetic testing (DTCGT). This industry, encompassing companies such as 23andMe and AncestryDNA, provides genetic test results directly to consumers without a medical professional acting as an intermediary. As genetics research and DNA sequencing technology improves, these DTC genetic tests have become quicker and less expensive, leading to the rapid growth of this industry. This systematic review aims to uncover the publics perception of these services and the major motivations for pursuing DTCGT. Additionally, the potential uses of genetic data will be discussed, specifically in regards to its future utility in healthcare. Although there are various benefits of these DTCGT services, there also exists much criticism of the industry. Because there are so many concerns regarding DTCGT, several changes will need to be implemented in order for the DTCGT industry to continue to thrive. This systematic review incorporates research from the existing literature on this topic and presents both the positive and negative views on DTCGT. Using the information found within the existing research, predictions are made about the future of the DTCGT industry and the use of genetic data in healthcare.

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 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 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 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 Direct to consumer Genetic Testing written by Albert Blankley and published by . This book was released on 2013 with total page 108 pages. Available in PDF, EPUB and Kindle. Book excerpt: "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.

Download or read book Media Coverage of Direct to consumer Genetic Testing written by Ashley Parrott and published by . This book was released on 2010 with total page 32 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

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: For the average person, genetic testing has two very different faces. The rise of genetic testing is often promoted as the democratization of genetics by enabling individuals to gain insights into their unique makeup. At the same time, many have raised concerns that genetic testing and sequencing reveal intensely personal and private information. As these technologies become increasingly available as consumer products, the ethical, legal, and regulatory challenges presented by genomics are ever looming. Assembling multidisciplinary experts, this volume evaluates the different models used to deliver consumer genetics and considers a number of key questions: How should we mediate privacy and other ethical concerns around genetic databases? Does aggregating data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate existing healthcare disparities? Contributing authors also provide guidance on protecting consumer privacy and safety while promoting innovation.

Download or read book 23andMe and the FDA written by Flavia Horvath Chen and published by . This book was released on 2014 with total page 65 pages. Available in PDF, EPUB and Kindle. Book excerpt: The oversight and regulation of the direct-to-consumer (DTC) genetic testing industry has been a perennial topic of policy discussion since the emergence of the field in the early 2000s. Despite claiming authority to regulate genetic tests under the 1976 Medical Device Amendments, the U.S. Food and Drug Administration (FDA) had historically exercised enforcement discretion over the industry and not subjected the majority of genetic tests to premarket review. The DTC genetic testing industry was born into an environment of regulatory uncertainty, with stakeholders calling variously for more comprehensive federal oversight and for the minimization of regulatory burdens in order to facilitate innovation. In 2010, the FDA notified DTC genetic testing firms of its intent to regulate the genetic testing services as medical devices, enabling the agency to require premarket review to ensure the safety and effectiveness of the health-related genetic tests. Using tools drawn from discourse analysis and discourse tracing, I examined how stakeholders have framed the benefits and risks of direct-to-consumer genetic testing in justifying the need for - and proposed structure of - regulatory oversight, focusing on the interaction between the FDA and a leading DTC company, 23andMe. My analysis traced the regulatory negotiations, which culminated in a November 2013 FDA Warning Letter to 23andMe which effectively halted the firm's ability to return health-related genetic testing results to their consumers. While 23andMe have framed the benefit of their services in terms of consumer autonomy, empowerment, the potential for disease prevention, and an individual's right to access her own genetic information, many clinicians and researchers have approached the potential benefit of DTC testing with more skepticism, advocating for an evidence-based evaluation of benefits and harms. FDA's enforcement actions were ultimately constrained by their purview to address concerns about the benefit and harms of DTC genetic testing construed in a narrowly medical way, leaving questions outside of the FDA's scope to regulate - such as issues of cybersecurity, corporate transparency, and responsibility - unresolved.

Download or read book Direct to Consumer Genetic Testing written by Stephanie Plamondon Bair and published by . This book was released on 2015 with total page 21 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book The Human Genome Project and the Future of Health Care written by Thomas H. Murray and published by Indiana University Press. This book was released on 1996-12-22 with total page 266 pages. Available in PDF, EPUB and Kindle. Book excerpt: "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.

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 Direct to consumer Genetic Tests written by Trevor Hecht and published by . This book was released on 2012 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Human Genetics and Genomics written by Bruce R. Korf and published by John Wiley & Sons. This book was released on 2012-11-19 with total page 280 pages. Available in PDF, EPUB and Kindle. Book excerpt: This fourth edition of the best-selling textbook, Human Genetics and Genomics, clearly explains the key principles needed by medical and health sciences students, from the basis of molecular genetics, to clinical applications used in the treatment of both rare and common conditions. A newly expanded Part 1, Basic Principles of Human Genetics, focuses on introducing the reader to key concepts such as Mendelian principles, DNA replication and gene expression. Part 2, Genetics and Genomics in Medical Practice, uses case scenarios to help you engage with current genetic practice. Now featuring full-color diagrams, Human Genetics and Genomics has been rigorously updated to reflect today’s genetics teaching, and includes updated discussion of genetic risk assessment, “single gene” disorders and therapeutics. Key learning features include: Clinical snapshots to help relate science to practice 'Hot topics' boxes that focus on the latest developments in testing, assessment and treatment 'Ethical issues' boxes to prompt further thought and discussion on the implications of genetic developments 'Sources of information' boxes to assist with the practicalities of clinical research and information provision Self-assessment review questions in each chapter Accompanied by the Wiley E-Text digital edition (included in the price of the book), Human Genetics and Genomics is also fully supported by a suite of online resources at www.korfgenetics.com, including: Factsheets on 100 genetic disorders, ideal for study and exam preparation Interactive Multiple Choice Questions (MCQs) with feedback on all answers Links to online resources for further study Figures from the book available as PowerPoint slides, ideal for teaching purposes The perfect companion to the genetics component of both problem-based learning and integrated medical courses, Human Genetics and Genomics presents the ideal balance between the bio-molecular basis of genetics and clinical cases, and provides an invaluable overview for anyone wishing to engage with this fast-moving discipline.

Download or read book Interpreting Direct to consumer Genetic Tests in the Public Health System written by Carla Beak and published by . This book was released on 2012 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Download or read book Nutrigenomics and the Future of Nutrition written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-08-27 with total page 155 pages. Available in PDF, EPUB and Kindle. Book excerpt: On December 5, 2017, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop titled Nutrigenomics and the Future of Nutrition in Washington, DC, to review current knowledge in the field of nutrigenomics as it relates to nutrition. Workshop participants explored the influence of genetic and epigenetic expression on nutritional status and the potential impact of personalized nutrition on health maintenance and chronic disease prevention. This publication summarizes the presentations and discussions from the workshop.

Download or read book Care Without Coverage written by Institute of Medicine and published by National Academies Press. This book was released on 2002-06-20 with total page 213 pages. Available in PDF, EPUB and Kindle. Book excerpt: Many Americans believe that people who lack health insurance somehow get the care they really need. Care Without Coverage examines the real consequences for adults who lack health insurance. The study presents findings in the areas of prevention and screening, cancer, chronic illness, hospital-based care, and general health status. The committee looked at the consequences of being uninsured for people suffering from cancer, diabetes, HIV infection and AIDS, heart and kidney disease, mental illness, traumatic injuries, and heart attacks. It focused on the roughly 30 million-one in seven-working-age Americans without health insurance. This group does not include the population over 65 that is covered by Medicare or the nearly 10 million children who are uninsured in this country. The main findings of the report are that working-age Americans without health insurance are more likely to receive too little medical care and receive it too late; be sicker and die sooner; and receive poorer care when they are in the hospital, even for acute situations like a motor vehicle crash.