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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.
This is an open access book. The book provides an overview of the state of research in developing countries – Africa, Latin America, and Asia (especially India) and why research and publications are important in these regions. It addresses budding but struggling academics in low and middle-income countries. It is written mainly by senior colleagues who have experienced and recognized the challenges with design, documentation, and publication of health research in the developing world. The book includes short chapters providing insight into planning research at the undergraduate or postgraduate level, issues related to research ethics, and conduct of clinical trials. It also serves as a guide towards establishing a research question and research methodology. It covers important concepts such as writing a paper, the submission process, dealing with rejection and revisions, and covers additional topics such as planning lectures and presentations. The book will be useful for graduates, postgraduates, teachers as well as physicians and practitioners all over the developing world who are interested in academic medicine and wish to do medical research.
This book discusses the common principles of morality and ethics derived from divinely endowed intuitive reason through the creation of al-fitr' a (nature) and human intellect (al-‘aql). Biomedical topics are presented and ethical issues related to topics such as genetic testing, assisted reproduction and organ transplantation are discussed. Whereas these natural sources are God’s special gifts to human beings, God’s revelation as given to the prophets is the supernatural source of divine guidance through which human communities have been guided at all times through history. The second part of the book concentrates on the objectives of Islamic religious practice – the maqa' sid – which include: Preservation of Faith, Preservation of Life, Preservation of Mind (intellect and reason), Preservation of Progeny (al-nasl) and Preservation of Property. Lastly, the third part of the book discusses selected topical issues, including abortion, assisted reproduction devices, genetics, organ transplantation, brain death and end-of-life aspects. For each topic, the current medical evidence is followed by a detailed discussion of the ethical issues involved.
D., University of Washington--Mary Anderlik Majumder, Baylor College of Medicine "American Journal of Human Genetics"
Colin Farrelly contemplates the various ethical and social quandaries raised by the genetic revolution. Recent biomedical advances such as genetic screening, gene therapy and genome editing might be used to promote equality of opportunity, reproductive freedom, healthy aging, and the prevention and treatment of disease. But these technologies also raise a host of ethical questions: Is the idea of “genetically engineering” humans a morally objectionable form of eugenics? Should parents undergoing IVF be permitted to screen embryos for the sex of their offspring? Would it be ethical to alter the rate at which humans age, greatly increasing longevity at a time when the human population is already at potentially unsustainable levels? Farrelly applies an original virtue ethics framework to assess these and other challenges posed by the genetic revolution. Chapters discuss virtue ethics in relation to eugenics, infectious and chronic disease, evolutionary biology, epigenetics, happiness, reproductive freedom and longevity. This fresh approach creates a roadmap for thinking ethically about technological progress that will be of practical use to ethicists and scientists for years to come. Accessible in tone and compellingly argued, this book is an ideal introduction for students of bioethics, applied ethics, biomedical sciences, and related courses in philosophy and life sciences.
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.
Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies offers thorough discussions on preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, sex selection, predictive testing, secondary findings, embryo reduction and the moral status of the embryo, genetic enhancement, and the sharing of genetic data. Chapter contributions from leading bioethicists and clinicians encourage a global, holistic perspective on applied challenges and the moral questions relating the implementation of genetic reproductive technology. The book is an ideal resource for practitioners, regulators, lawmakers, clinical researchers, genetic counselors and graduate and medical students. As the Human Genome Project has triggered a technological revolution that has influenced nearly every field of medicine, including reproductive medicine, obstetrics, gynecology, andrology, prenatal genetic testing, and gene therapy, this book presents a timely resource. - Provides practical analysis of the ethical issues raised by cutting-edge techniques and recent advances in prenatal and reproductive genetics - Contains contributions from leading bioethicists and clinicians who offer a global, holistic perspective on applied challenges and moral questions relating to genetic and genomic reproductive technology - Discusses preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, ethical issues, and more
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.
Breakthroughs in genetics present us with a promise and a predicament. The promise is that we will soon be able to treat and prevent a host of debilitating diseases. The predicament is that our newfound genetic knowledge may enable us to manipulate our nature—to enhance our genetic traits and those of our children. Although most people find at least some forms of genetic engineering disquieting, it is not easy to articulate why. What is wrong with re-engineering our nature? The Case against Perfection explores these and other moral quandaries connected with the quest to perfect ourselves and our children. Michael Sandel argues that the pursuit of perfection is flawed for reasons that go beyond safety and fairness. The drive to enhance human nature through genetic technologies is objectionable because it represents a bid for mastery and dominion that fails to appreciate the gifted character of human powers and achievements. Carrying us beyond familiar terms of political discourse, this book contends that the genetic revolution will change the way philosophers discuss ethics and will force spiritual questions back onto the political agenda. In order to grapple with the ethics of enhancement, we need to confront questions largely lost from view in the modern world. Since these questions verge on theology, modern philosophers and political theorists tend to shrink from them. But our new powers of biotechnology make these questions unavoidable. Addressing them is the task of this book, by one of America’s preeminent moral and political thinkers.
Genetic information plays an increasingly important role in ourlives. As a result of the Human Genome Project, knowledge ofthe genetic basis of various diseases is growing, withimportant consequences for the role of genetics in clinicalpractice, health care systems and for society at large. In theclinical setting genetic testing may result in a better insightinto susceptibility for inheritable diseases, not only before orafter birth, but also at later stages in life. Besides prenataltesting and pre-conceptional testing, predictive testing hasresulted in new possibilities for the early detection, treatmentand prevention of inheritable diseases. However, not all inheritable diseases that can be predicted onthe basis of genetic information can be treated or cured.Should we offer genetic tests to people for untreatablediseases? Should we test every individual who wants to knowhis or her genetic status? Should we inform family membersabout the results of genetic tests of individuals, even whenthere are no possibilities for treatment? What, in such cases,is the role of the "right-not-to-know"? Should we informfamily members when there is only an increased risk of adisease? This book deals with the ethical issues of clinicalgenetics, as well as ethical issues that arise in geneticscreening, the research of populations, and the use of geneticinformation for access to insurance and the workplace.