In this study, leading scholars confront the question: should individuals be allowed personal property rights to their DNA, cells, or tissues?
In this study, leading scholars confront the question: should individuals be allowed personal property rights to their DNA, cells, or tissues?
Author: Clarisa Long
Publisher: American Enterprise Institute
The purpose of this document is to consolidate the diverse literature and opinions on genetics in the workplace, to flag important issues, and to provide some considerations for current and future research and practice. Recent advances in understanding the human genome have created opportunities for disease prevention and treatment. Even though the focus of attention on applications of genetic discoveries has been largely outside of the workplace, genetic information and genetic testing are impacting today's workplace. The issues related to genetic information and genetic testing in the workplace have the potential to affect every worker in the United States. This NIOSH document provides a discussion on the benefits, limitations, and risks of genetic information and genetic tests. Anecdotal evidence already exists of employers inappropriately using genetics tests. Although genetic technology is becoming widely available, a serious knowledge gap on the part of consumers of this technology is a concern. Basic information on genetics, genetic research, genetic testing, genetic information, informed consent, privacy, confidentiality, technological advances based on genetics, notification, data management, and discrimination need to be discussed. The passage of the Genetic Information Nondiscrimination Act of 2008 has abated some concerns about the misuse of genetic information. This NIOSH document provides information on these issues to help the reader be made more aware of the multitude of scientific, legal, and ethical issues with regard to the use of genetics in occupational safety and health research and practice. This document has been written to appeal to both targeted and broad audiences. Occupational safety and health professionals and practitioners interested in the use of genetic information in the workplace will be most informed by the chapters on the role of genetic information in the workplace, health records, genetic monitoring, genetic screening, and the ethical, social, and legal implications of this information. Academics and researchers will be especially interested in the chapter on incorporating genetics into occupational health research. Employers, workers, and other lay readers will likely find the chapters on health records and ethical, social, and legal implications of genetic information in the workplace provide the most information. Regardless of specific reader interest levels, the goal of this document is to draw attention to the many gaps in knowledge about the use of genetic information and to stimulate dialogue on its use in the workplace.
The purpose of this document is to consolidate the diverse literature and opinions on genetics in the workplace, to flag important issues, and to provide some considerations for current and future research and practice.
Author: Department of Health and Human Services
Category: Technology & Engineering
As more patients seek information about family risks of psychiatric illness -- an interest likely to increase as gene-identification studies are publicized -- most psychiatrists agree it is their role to discuss these issues but admit they are ill-prepared to do so. Psychiatric Genetics addresses that need as the first book to focus on clinical applications of genetics in psychiatry. It covers issues involved in genetic counseling, the interpretation of familial and genetic information for clinical use, information regarding risks associated with specific psychiatric disorders, risk/benefit considerations related to medication use during pregnancy, and the ethical and social implications of psychiatric genetic knowledge and research -- including the prospects for genetic testing. While other books have been written for the genetics community, this volume is addressed to practitioners: a clinically relevant resource that can help them understand the often bewildering flood of information about genetics -- information difficult to interpret, let alone integrate into practice -- and enable them to respond to patients' requests to predict the risk of recurrence of psychiatric illness or provide information about reproductive and pregnancy-related issues. Experts from psychiatry, genetic epidemiology, molecular genetics, genetic counseling, cognitive psychology, and ethics focus on issues that have received little attention elsewhere yet are of increasing importance to clinicians. Written at a level that assumes no particular expertise in genetics, the book features these immediately applicable benefits: It offers a framework for understanding and critically evaluating the psychiatric genetic research literature, enabling clinicians to better understand the meaning and limitations of genetic discoveries when patients raise questions about media reports. It provides a resource for clinicians who would like more information about the role and content of genetic counseling, outlining a typical counseling session while demonstrating how risks are estimated and discussed. It summarizes genetic aspects of major psychiatric conditions -- from childhood-onset disorders through psychotic, mood, and anxiety disorders to dementia -- as well as neuropsychiatric manifestations of other genetic disorders. It alerts clinicians to risk/benefit considerations related to medication use during pregnancy. It covers the ethical, legal, and social implications of genetic research and counseling, illustrating the dilemmas that arise with new advances. Whether used as a clinical guide, reference, or ancillary text, this book sets the standard for the application of psychiatric genetic knowledge in everyday practice. Psychiatrists, mental health clinicians, and genetic counselors will find it an essential resource for all patient encounters in which genetic issues arise.
While other books have been written for the genetics community, this volume is addressed to practitioners: a clinically relevant resource that can help them understand the often bewildering flood of information about genetics -- information ...
Author: Jordan W. Smoller
Publisher: American Psychiatric Pub
I appreciate the opportunity to speak with you about genetic testing , privacy of genetic information and the role of health plans which are providing coverage for members at high risk for certain treatable diseases .
Author: United States. Congress. House. Committee on the Judiciary. Subcommittee on the Constitution
Category: Confidential communications
Author: ESRC Genomics Network
As genetic technologies advance, genetic testing may well offer the prospect of detecting the onset of future disabilities. Some research also forwards that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed, or the propensity for risk-taking. As this technology becomes more prevalent, there is a danger that genetic information may be misused by third parties and that particular genetic profiles may be discriminated against by employers, by providers of social goods and services, such as insurance companies and even by educational facilities. This book explores the different forms and potential uses of genetic testing. Drawing together leading experts in disability law, bioethics, health law and a range of related fields, it highlights the ethical and legal challenges arising as a result of emerging and rapidly advancing genetic science. On examining transatlantic perspectives on the matter, chapters in the book ask whether the US Genetic Information Nondiscrimination Act (GINA) is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating fears of discrimination. The book also reviews what insights may be gained from GINA within employment and health insurance contexts, and asks how the UN Convention on the Rights of Persons with Disabilities (CRPD) may impact similar debates within the European Union. The book focuses particularly on the legislative and policy framework in the European Union, with an emphasis on the gaps in protection and the scope for specific legislative action in this area. This book will be of great interest to scholars and students of discrimination law, bioethics and disability law, and will be of considerable use to legal practitioners, medical practitioners and policy-makers in this area.
This book will be of great interest to scholars and students of discrimination law, bioethics and disability law, and will be of considerable use to legal practitioners, medical practitioners and policy-makers in this area.
Author: Gerard Quinn
Rapid advances in technology have lowered the cost of sequencing an individual's genome from the several billion dollars that it cost a decade ago to just a few thousand dollars today and have correspondingly greatly expanded the use of genomic information in medicine. Because of the lack of evidence available for assessing variants, evaluation bodies have made only a few recommendations for the use of genetic tests in health care. For example, organizations, such as the Evaluation of Genomic Applications in Practice and Prevention working group, have sought to set standards for the kinds of evaluations needed to make population-level health decisions. However, due to insufficient evidence, it has been challenging to recommend the use of a genetic test. An additional challenge to using large-scale sequencing in the clinic is that it may uncover "secondary," or "incidental," findings - genetic variants that have been associated with a disease but that are not necessarily related to the conditions that led to the decision to use genomic testing. Furthermore, as more genetic variants are associated with diseases, new information becomes available about genomic tests performed previously, which raises issues about how and whether to return this information to physicians and patients and also about who is responsible for the information. To help develop a better understanding of how genomic information is used for healthcare decision making, the Roundtable on Translating Genomic-Based Research for Health of the Institute of Medicine held a workshop in Washington,DC in February 2014. Stakeholders, including clinicians, researchers, patients, and government officials, discussed the issues related to the use of genomic information in medical practice. Assessing Genomic Sequencing Information for Health Care Decision Making is the summary of that workshop. This report compares and contrasts evidence evaluation processes for different clinical indications and discusses key challenges in the evidence evaluation process.
Assessing Genomic Sequencing Information for Health Care Decision Making is the summary of that workshop.
Author: Institute of Medicine
Publisher: National Academies Press
This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.
This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies.
Author: Lara Khoury
Publisher: Springer Nature
This volume will be of interest to philosophers of medicine, bioethicists, and philosophers, medical professionals, historians of western medicine, and health policymakers. The book provides an overview of key debates in the history of modern western medicine on the nature, knowledge, and value of disease. It includes case studies of e.g. AIDS, genetic disease, and gendered disease.
GENETIC testing—declaration—definitions—limitations on disclosure of information—liability—legislative declaration. ... to whom the information pertains; (b) Any information concerning an individual obtained through the use of genetic ...
Author: Mary Ann Gardell Cutter
Publisher: Springer Science & Business Media
Our rapidly expanding genetic knowledge today points toward a near future in which the elements of humanity closest to our moral core may themselves be produced, manipulated, commodified, and exchanged. Explores the moral and ethical concerns derived from an increasing knowledge of genetics and the variety of its commercial applications A major contribution to the emerging understanding of the role that ethics will play in genetic commerce Written by experts from the academic and corporate sector, with diverse backgrounds in business, social science, and philosophy Addresses a range of relevant issues, including genetic screening, the use of individual’s genetic information, the rise of genetically modified foods, patenting, pharmaceutical mergers and monopolization, and the implications of genetic testing on non-human mammals
Edited by renowned business ethicist Robert W. Kolb, all articles are new for this volume.
Author: Robert W. Kolb
Publisher: John Wiley & Sons
Category: Business & Economics
The Human Genome Project is an expensive, ambitious, and controversial attempt to locate and map every one of the approximately 100,000 genes in the human body. If it works, and we are able, for instance, to identify markers for genetic diseases long before they develop, who will have the right to obtain such information? What will be the consequences for health care, health insurance, employability, and research priorities? And, more broadly, how will attitudes toward human differences be affected, morally and socially, by the setting of a genetic “standard”? The compatibility of individual rights and genetic fairness is challenged by the technological possibilities of the future, making it difficult to create an agenda for a “just genetics.” Beginning with an account of the utopian dreams and authoritarian tendencies of historical eugenics movements, this book’s nine essays probe the potential social uses and abuses of detailed genetic information. Lucid and wide-ranging, these contributions will interest bioethicists, legal scholars, and policy makers. Essays: “The Genome Project and the Meaning of Difference,” Timothy F. Murphy “Eugenics and the Human Genome Project: Is the Past Prologue?,” Daniel J. Kevles “Handle with Care: Race, Class, and Genetics,” Arthur L. Caplan “Public Choices and Private Choices: Legal Regulation of Genetic Testing,” Lori B. Andrews “Rules for Gene Banks: Protecting Privacy in the Genetics Age,” George J. Annas “Use of Genetic Information by Private Insurers,” Robert J. Pokorski “The Genome Project, Individual Differences, and Just Health Care,” Norman Daniels “Just Genetics: A Problem Agenda,” Leonard M. Fleck “Justice and the Limitations of Genetic Knowledge,” Marc A. Lappé This title is part of UC Press's Voices Revived program, which commemorates University of California Press’s mission to seek out and cultivate the brightest minds and give them voice, reach, and impact. Drawing on a backlist dating to 1893, Voices Revived makes high-quality, peer-reviewed scholarship accessible once again using print-on-demand technology. This title was originally published in 1994.
The compatibility of individual rights and genetic fairness is challenged by the technological possibilities of the future, making it difficult to create an agenda for a “just genetics.” Beginning with an account of the utopian dreams ...
Author: Timothy F. Murphy
Publisher: University of California Press
" ... report provides coherent guidance on obtaining consent prior to genetic tests, on regulations for giving and sharing genetic information with family members and between professionals, and on genetic investigations on stored human ...
Author: Peter Farndon
Publisher: Royal College of Physicians
Category: Blood Specimen Collection
This text describes the role that epidemiologic methods play in the continuum from gene discovery to the development and application of genetic tests. It provides a foundation that should help researchers, policy makers and practitioners integrate genomics into medical and public health practice.
This text describes the role that epidemiologic methods play in the continuum from gene discovery to the development and application of genetic tests.
Author: Muin Khoury
Publisher: Oxford University Press
Collectively, genetic diseases and common diseases with a genetic component pose a significant public health burden. With completion of the human genome sequence, scientists will now focus on understanding the clinical implications of the sequence information. Clinical genetic tests are becoming available at a rapid rate. Testing is regulated by the federal government and tests are beginning to be included in health insurance benefits packages. Issues surrounding genetic testing and non-discrimination addressed in this book include: What is health information and how is it currently used by health insurers and employers?; What is genetic information?; Is genetic information different from other health information?; What are the implications of having genetic information: for the individual undergoing testing? for his/her family? for society?; What evidence exists to suggest that discrimination is a problem?; Will the proposed legislation have been sufficient to protect "genetic information" and "genetic tests" that are of concern?; How does the proposed legislation compare with existing laws and regulations governing discrimination?
Issues surrounding genetic testing and non-discrimination addressed in this book include: What is health information and how is it currently used by health insurers and employers?; What is genetic information?
Author: Michele Schoonmaker
Publisher: Nova Publishers
This thesis reports a qualitative study that collected multiple perspectives of New Zealand genetic services stakeholders concerning genetic information management issues. With the rapid development of human genetic variation knowledge and medical testing technologies, the demand for clinical genetic services is expanding in many healthcare systems. There are, however, many challenges in managing genetic testing and understanding test results. Taking a grounded theory approach, semi-structured interviews were conducted with 48 participants in order to understand their experiences, expectations, and concerns. The interview data were triangulated with our field notes, literature, and by applying a semantic space modelling technique - hyperspace analogue to language. The data analysis took a general inductive approach with a constant analytic comparison strategy. Three themes emerged from the data that identify gaps in the use of information relating to genetic services. Firstly, four service delivery models were identified in operation, including both those expected models involving genetic counsellors and some variations that do not route through the formal genetic services program. Secondly, a number of issues were perceived by the participants as barriers to sharing and using genetic information, including technological, organizational, institutional, legal, ethical, and social issues. Thirdly, the wider use of genetic testing technology is also impeded by the mixed understanding of genetic test utilities, particularly among clinicians, and is limited by the capacity of clinical genetic services. Due to the effect of these three themes, the potential of human genetic variation knowledge to enhance healthcare delivery has been put on a "leash." Targeting these problems, information technologies and knowledge management tools may support key tasks in genetic services delivery, improve knowledge processes in the domain, and enhance knowledge networks. Promising technologies include decision support systems, electronic referral systems, electronic health record or personal health record systems, data submission and other knowledge processing tools, ontology, and knowledge networking tools. The establishment of effective ethics and policy frameworks is also important in leveraging the power of genetic information for better healthcare outcomes.
This thesis reports a qualitative study that collected multiple perspectives of New Zealand genetic services stakeholders concerning genetic information management issues.
Author: Yulong Gu
Category: Genetic counseling
Of genetic commission recomendations -- Michigan commission on genetic privacy and progress -- Genetic testing in health insurance and employment -- Past perfect, future conditional: enforcement trends under the ADA -- Protecting genetic information.
As a result of the increase in genetic testing and the greater availability of genetic information , legal issues ... use of genetic information for discriminatory purposes and show that some employers may use information obtained from ...
Author: United States. Congress. Senate. Committee on Health, Education, Labor, and Pensions
Category: Discrimination in employment
Knowledge of the genetic basis of human diseases is growing rapidly, with important implications for pre-conceptional, prenatal, and predictive testing. While new genetic testing offers better insight into the causes of and susceptibility for heritable diseases, not all inherited diseases that can be predicted on the basis of genetic information can be treated or cured. Should we test everyone who wants to know his or her genetic status, even when there are no possibilities for treatment? What is the role of the "right-not-to-know?" Do we test children for adult onset disorders because the parents just "have to know" or do we respect the children's right to choose when they are older? Do we allow commercial companies to offer genetic tests directly to consumers without the proper oversight regarding what the test results will mean? By using a creative approach that focuses on a single extended family as a case example to illustrate each chapter's key point, the authors elucidate ethical issues arising in the genetics clinic and laboratory surrounding many timely issues, including: · prenatal and pre-implantation genetic diagnosis · assisted reproductive technologies · incidental findings in genetic testing · gene patenting · testing children for adult onset disorders · direct to consumer testing Ethical Dilemmas in Genetic Counseling: Principles through Case Scenarios is essential reading for anyone interested in the ethical issues surfacing in common genetics practice. Written exclusively by genetic counselors, it makes a significant contribution to the field of ethics in genetics and thus will appeal not only to genetic counselors but to physicians, nurses, and all those concerned with bioethics and social science.
There is no question that the market for genetic information exists and is likely to expand. Pharmaceutical companies and researchers are motivated to obtain DNA data linked to health outcomes. Several recent examples suggest a ...
Author: Janice Berliner MS, CGC
Publisher: Oxford University Press
Findings and Purpose : An individual's genetic information is uniquely private . Improper disclosure or interpretation of genetic information may lead to signifcant harm : discrimination in employment , education , health care and ...
Author: United States
Category: Genetic disorders
Completely updated to help nurses learn to ìthink geneticallyî Todayís nurses must be able to ìthink geneticallyî to help individuals and families who are affected by genetic disease or contemplating genetic testing. This book is a classic resource for nursing students and practitioners at all levels who need to acquire the knowledge and skills for using genomics in their practice. This completely updated second edition encompasses the many recent advances in genetic research and knowledge, providing essential new information on the science, technology, and clinical application of genomics. It focuses on the provision of individualized patient care based on personal genetics and dispositions. The second edition is designed for use by advanced practice nursing programs, as well as undergraduate programs. It pinpoints new developments in prenatal, maternity, and pediatric issues and supplies new information on genomics-based personal drug therapy, environmental susceptibilities, genetic therapies, epigenetics, and ethics The text features a practical, clinically oriented framework in line with the core competencies defined by the AACN. It delivers information according to a lifespan approach used in the practice setting. The second edition continues to provide basic information on genomics, its impact on healthcare, and genetic disorders. It covers prevention, genetic counseling and referral, neuropsychiatric nursing, and public health. The core of the text presents information on a variety of diseases that affect patients throughout the lifespan, with specific guidance on the nursing role. Also included are tests for a variety of diseases and information on pharmacogenomics, which enable health care providers to select the best drugs for treatment based on a patientís genetic makeup. Plentiful case study examples support the information throughout. Additionally, an instructorís package of PowerPoint slides and a test bank are provided for use at both the graduate and undergraduate levels. New to the Second Edition: Completely updated with several new chapters Personal drug therapy based on genomics Environmental susceptibilities Prenatal detection and diagnosis Newborn and genetic screening Reproductive technologies Ethical issues Genetic therapies Epigenetics Content for graduate-level programs PowerPoint slides and a test bank for all student levels Key Features: Encompasses state-of-the-art genomics from a nursing perspective Provides a practical, clinically oriented lifespan approach Covers science, technology, and clinical application of genomics Addresses prevention, genetic testing, and treatment methods Written for undergraduate- and graduate-level nursing students
This book is a classic resource for nursing students and practitioners at all levels who need to acquire the knowledge and skills for using genomics in their practice.
Author: Christine E. Kasper, PhD, RN, FAAN, FACSM
Publisher: Springer Publishing Company
Introduces major concepts in the modification of genes in plants, animals, and humans, including coverage of such topics as DNA and the law, genetically modified foods, and the stem-cell debate.
one-gene one-enzyme theory, 102 Genetic counseling, 50–51, 134, 212–213, 256 Genetic diseases: associations or ... 256, 258 public attitudes, 182–185 safeguards, 187 social concerns, 59–60 Genetic testing, use of information from.
Author: Harry LeVine