Based in part on a survey of ethical decision-marking among 682 medical geneticists worldwide, this book includes a chapter authored by a geneticistand an ethicist in 19 nations, describing genetic services, counselling, screening, prenatal diagnosis, and major ethical problems and social controversies faced by geneticists. The concluding chapter describes ethical and policy issues that exist worldwide, and offerssome possible resolutions.

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 the revised edition of the casebook, Genetics: Ethics, Law, and Policy, which has been used successfully in law schools in both the seminar and course context. It is authored by three of the nation's leading experts on genetic ethics, law and policy. Students enjoy the course because of the topicality of the subjects, many of which they hear about in the news (gene discoveries, embryo stem cell research). Faculty members enjoy teaching from the book because of the excellent teaching manual and because they can link it to other topics ? the casebook covers issues in health law, employment law, insurance law, criminal law, family law, and other fields. The casebook is supplemented regularly on the TWEN website, so that it is always current. A background in genetics is not required for either students or teachers. The casebook and teachers? manual are written so that the casebook can be used for undergraduate courses or courses for the health professions, for public health, or for public policy.

Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.

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.

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.

Each cell in the human body contains about 20,000 genes. Genes carry the information that determines the traits that are passed on to you, or inherited, from your parents. Genes are the instructions for the growth and development of our bodies, however mutations in a person's genome can result in a genetic condition or disease. How do the building blocks of the human body - DNA, genes and chromosomes - interrelate and interact with the environment, and contribute to a range of serious diseases? What are the dilemmas, risks and regulations associated with genetic testing and its related privacy and discrimination issues, the corporate patenting of people's genes, and the growing prospects of human genetic enhancement? What are the ethical implications of gene therapies and emerging biotechnology techniques like gene editing (CRISPR) in the manipulation of the human genome, such as the recent controversial development of three-parent babies? In this new era of personalised medicine are we as a species, going too far, or are we on a promising path to curing many deadly diseases? Does this all amount to scientific progress, or are we playing God with our own genes?

This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.

A leading bioethicist offers critical insights into the scientific, ethical, and political implications of human genome editing. Designer babies, once found only in science fiction, have become a reality. We are entering a new era of human evolution with the advent of a technology called CRISPR, which allows scientists to modify our genes. Although CRISPR shows great promise for therapeutic use, it raises thorny ethical, legal, political, and societal concerns because it can be used to make permanent changes to future generations. What if changes intended for the good turn out to have unforeseen negative effects? What if the divide between the haves and have-nots widens as a result? Who decides whether we genetically modify human beings and, if so, how? Françoise Baylis insists that we must all have a role in determining our future as a species. The scientists who develop and use genome-editing tools should not be the only ones making decisions about future uses of the technology. Such decisions must be the fruit of a broad societal consensus. Baylis argues that it is in our collective interest to assess and steer the development and implementation of biomedical technologies. Members of the public with different interests and diverse perspectives must be among the decision makers; only in this way can we ensure that societal concerns are taken into account and that responsible decisions are made. We must be engaged and informed, think critically, and raise our voices as we create our future together. Sharp, rousing, timely, and thought-provoking, Altered Inheritance is essential reading. The future of humanity is in our hands.

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.