Should we make people healthier, smarter, and longer-lived if genetic and medical advances enable us to do so? Matti Häyry asks this question in the context of genetic testing and selection, cloning and stem cell research, gene therapies and enhancements. The ethical questions explored include parental responsibility, the use of people as means, the role of hope and fear in risk assessment, and the dignity and meaning of life. Taking as a starting point the arguments presented by Jonathan Glover, John Harris, Ronald M. Green, Jürgen Habermas, Michael J. Sandel, and Leon R. Kass, who defend a particular normative view as the only rational or moral answer, Matti Häyry argues that many coherent rationalities and moralities exist in the field, and that to claim otherwise is mistaken.

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.

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.

AcknowledgmentsIntroduction1. Framework for Understanding the Thinning of a Public Debate2. Setting the Stage: The Eugenicists and the Challenge from Theologians3. Gene Therapy, Advisory Commissions, and the Birth of the Bioethics Profession4. The President's Commission: The "Neutral" Triumph of Formal Rationality5. Regaining Lost Jurisdictional Ground and the Triumph of the Bioethics Profession6. "Reproduction" as the New Jurisdictional Metaphor: Autonomy and the Internal Threat to the Bioethics/Science Jurisdiction7. Conclusion: The Future of Public Bioethics and the HGE DebateAppendix: Methods and TablesNotesWorks CitedIndex Copyright © Libri GmbH. All rights reserved.

Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.

In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center

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.