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Author: Carla Beak Publisher: ISBN: Category : Genetic counseling Languages : en Pages : 0
Book Description
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.
Author: Carla Beak Publisher: ISBN: Category : Genetic counseling Languages : en Pages : 0
Book Description
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.
Author: Trevor Hecht Publisher: ISBN: 9781619421752 Category : Genetic screening Languages : en Pages : 0
Book Description
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: Anna Harris Publisher: Routledge ISBN: 1317368185 Category : Social Science Languages : en Pages : 176
Book Description
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: National Research Council Publisher: National Academies Press ISBN: 0309162165 Category : Medical Languages : en Pages : 106
Book Description
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: United States. Congress. House. Committee on Energy and Commerce. Subcommittee on Oversight and Investigations Publisher: ISBN: Category : Direct-to-consumer medical device advertising Languages : en Pages : 244
Author: Forum on Drug Discovery Publisher: ISBN: 9780309383585 Category : Languages : en Pages : 106
Book Description
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: Albert Blankley Publisher: ISBN: Category : Genetic screening Languages : en Pages : 108
Book Description
"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: United States. Congress Publisher: Createspace Independent Publishing Platform ISBN: 9781981675678 Category : Languages : en Pages : 234
Book Description
Direct-to-consumer genetic testing and the consequences to the public health : hearing before the Subcommittee on Oversight and Investigations of the Committee on Energy and Commerce, House of Representatives, One Hundred Eleventh Congress, second session, July 22, 2010.
Author: Institute of Medicine Publisher: National Academies Press ISBN: 0309047986 Category : Medical Languages : en Pages : 353
Book Description
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.
Author: Carla Beak
Author: Carla Beak
Author: Trevor Hecht
Author: Anna Harris
Author: National Research Council
Author: United States. Congress. House. Committee on Energy and Commerce. Subcommittee on Oversight and Investigations
Author: Gail H. Javitt
Author: Forum on Drug Discovery
Author: Albert Blankley
Author: United States. Congress
Author: Institute of Medicine