This book, written by a leading geneticist, examines the ethical and social issues raised by the genetic testing of children. The opinions of geneticists, ethicists and affected families are all included to give a balanced view of this controversial field. Issues covered include confidentiality, potential abuses of genetic information (eg the use of test results by insurance companies) and the value of predictive genetic testing. The aim of the book is to improve awareness of the complexity of the issues raised and provide suggestions as to how the discussions must develop - it therefore raises new questions as well as answering those that already exist.
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.
Get a quick, expert overview of the many key facets of pediatric cancer genetics with this concise, practical resource by Dr. Nathaniel H. Robin and Meagan Farmer, MS, CGC, MBA. Ideal for pediatric oncologists and all providers who care for children, this easy-to-read reference addresses the remarkable potential of genetic testing as well as the complexities of choosing the correct test, understanding the results, and counseling the family. Features a wealth of information on pediatric cancer genetics, including the epidemiology and biology of cancer and the genetic evaluation process and role of genetic counselors. Highlights examples of syndromes that present in childhood and increase susceptibility to cancer. Discusses the genetic evaluation process in context of the multidisciplinary care of children with cancer. Considers the ethical and legal issues of genetic testing in children and provides illustrative case examples. Consolidates today’s available information and guidance in this timely area into one convenient resource.
Anticipate and Communicate is the Bioethics Commission's sixth major report. In this report the Bioethics Commission offers specific recommendations for the management of incidental and secondary findings in clinical, research and direct-to-consumer settings. Emerging medical technologies, changing cost structures, and evolving medical practice make the likelihood of discovering incidental and secondary findings across contexts a growing certainty. Such findings can be lifesaving, but also can lead to uncertainty and distress if they are unexpected or identify conditions for which no effective treatment is available.
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.
This book, written by a leading geneticist, examines the ethical and social issues raised by the genetic testing of children. The opinions of geneticists, ethicists and affected families are all included to give a balanced view of this controversial field. Issues covered include confidentiality, potential abuses of genetic information (eg the use of test results by insurance companies) and the value of predictive genetic testing. The aim of the book is to improve awareness of the complexity of the issues raised and provide suggestions as to how the discussions must develop - it therefore raises new questions as well as answering those that already exist.
This book assists health care providers to understand the specific interplay of the roles and relationships currently forming the debates in pediatric clinical ethics. It builds on the fact that, unlike adult medical ethics, pediatric ethics begins within an acutely and powerfully experienced dynamic of patient-family-state-physician relationship. The book provides a unique perspective as it interacts with established approaches as well as recent developments in pediatric ethics theory, and then explores these developments further through cases. The book first focuses on setting the stage by introducing a theoretical framework and elaborating how pediatric ethics differ from non-pediatric ethics. It approaches different theoretical frameworks in a critical manner drawing on their strengths and weaknesses. It helps the reader in developing an ability to engage in ethical reasoning and moral deliberation in order to focus on the wellbeing of the child as the main participant in the ethical deliberation, as well as to be able to identify the child’s moral claims. The second section of the book focuses on the practical application of these theoretical frameworks and discusses specific areas pertaining to decision-making. These are: the critically ill child, new and enduring ethical controversies, and social justice at large, the latter of which includes looking at the child’s place in society, access to healthcare, social determinants of health, and vaccinations. With the dynamic changes and challenges pediatric care faces across the globe, as well as the changing face of new technologies, no professional working in the field of pediatrics can afford not to take due note of this resource.
What limits the genetic choices parents make for their children? Is it okay to select the sex of our children, or for deaf parents to select deaf children? In this second edition of Genetic Dilemmas, Davis argues that parental reproductive autonomy should be limited by respect for the future autonomy of the children created by these measures. Praise for the first edition: "A thoughtful, timely and comprehensive look at genetics in the modern era by a recognized scholar of both their legal and humanistic implications. An excellent read!" -R. Alta Charo, Professor of Law and Medical Ethics, University of Wisconsin- Madison. "Dena Davis has been the most consistent and important voice insisting that we take seriously the concept of each child's right to an open future, and what respecting that right would mean for new technologies in genetics and reproduction. This engaging new book is the work of a thoughtful and humane scholar, and deserves a broad readership." -Thomas H. Murray, President of The Hastings Center "Dena Davis offers an engaging, informative and provocative argument in Genetic Dilemmas. Her primary accomplishment is to draw much-needed attention to the interests of the child in reproductive decision-making...she has succeeded admirably." -Mary Terrell White, Medical Humanities Review "People now face a dizzying array of choices about reproduction-from sex selection to cloning, from prenatal screening to genetic enhancement. In this engaging and path-breaking book, Dena Davis intelligently and compassionately explores the often-ignored impact of these choices on the children that are created and the society in which they will be raised." -Lori Andrews, Professor of Law, Chicago-Kent College of Law
