Heritable Human Genome Editing


Book Description

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.




Designing Babies


Book Description

Designing Babies examines the ethical, social, and policy concerns surrounding the use of Assisted Reproductive Technologies (ARTs). Basing his analysis on in-depth interviews with providers and patients, Robert Klitzman provides vital insights, guidance, and specific policy recommendations for understanding and regulating these procedures.




Choosing Children


Book Description

Progress in genetic and reproductive technology now offers us the possibility of choosing what kinds of children we do and don't have. Should we welcome this power, or should we fear its implications? There is no ethical question more urgent than this: we may be at a turning-point in the history of humanity. The renowned moral philosopher and best-selling author Jonathan Glover shows us how we might try to answer this question, and other provoking and disturbing questions to which it leads. Surely parents owe it to their children to give them the best life they can? Increasingly we are able to reduce the number of babies born with disabilities and disorders. But there is a powerful new challenge to conventional thinking about the desirability of doing so: this comes from the voices of those who have these conditions. They call into question the very definition of disability. How do we justify trying to avoid bringing people like them into being? In 2002 a deaf couple used sperm donated by a friend with hereditary deafness to have a deaf baby: they took the view that deafness is not a disability, but a difference. Starting with the issues raised by this case, Jonathan Glover examines the emotive idea of 'eugenics', and the ethics of attempting to enhance people, for non-medical reasons, by means of genetic choices. Should parents be free, not only to have children free from disabilities, but to choose, for instance, the colour of their eyes or hair? This is no longer a distant prospect, but an existing power which we cannot wish away. What impact will such interventions have, both on the individuals concerned and on society as a whole? Should we try to make general improvements to the genetic make-up of human beings? Is there a central core of human nature with which we must not interfere? This beautifully clear book is written for anyone who cares about the rights and wrongs of parents' choices for their children, anyone who is concerned about our human future. Glover handles these uncomfortable questions in a controversial but always humane and sympathetic manner.




The Genetic Testing of Children


Book Description

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.




Assessing Genetic Risks


Book Description

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.




Pediatric Bioethics


Book Description

This volume offers a theoretical and practical overview of the ethics of pediatric medicine. It serves as a fundamental handbook and resource for pediatricians, nurses, residents in training, graduate students, and practitioners of ethics and healthcare policy. Written by a team of leading experts, Pediatric Bioethics addresses those difficult ethical questions concerning the clinical and academic practice of pediatrics, including an approach to recognizing boundaries when confronted with issues such as end of life care, life-sustaining treatment, extreme prematurity, pharmacotherapy, and research. Thorny topics such as what constitutes best interests, personhood, or distributive justice and public health concerns such as immunization and newborn genetic screening are also addressed.




Human Genome Editing


Book Description

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.




Your Genes, Your Choices


Book Description

Program discusses the Human Genome Project, the science behind it, and the ethical, legal and social issues raised by the project.




The Gene Machine


Book Description

A sharp-eyed exploration of the promise and peril of having children in an age of genetic tests and interventions Is screening for disease in an embryo a humane form of family planning or a slippery slope toward eugenics? Should doctors tell you that your infant daughter is genetically predisposed to breast cancer? If tests revealed that your toddler has a genetic mutation whose significance isn’t clear, would you want to know? In The Gene Machine, the award-winning journalist Bonnie Rochman deftly explores these hot-button questions, guiding us through the new frontier of gene technology and how it is transforming medicine, bioethics, health care, and the factors that shape a family. Rochman tells the stories of scientists working to unlock the secrets of the human genome; genetic counselors and spiritual advisers guiding mothers and fathers through life-changing choices; and, of course, parents (including Rochman herself) grappling with revelations that are sometimes joyous, sometimes heartbreaking, but always profound. She navigates the dizzying and constantly expanding array of prenatal and postnatal tests, from carrier screening to genome sequencing, while considering how access to more tests is altering perceptions of disability and changing the conversation about what sort of life is worth living and who draws the line. Along the way, she highlights the most urgent ethical quandary: Is this technology a triumph of modern medicine or a Pandora’s box of possibilities? Propelled by human narratives and meticulously reported, The Gene Machine is both a scientific road map and a meditation on our power to shape the future. It is a book that gets to the very core of what it means to be human.




The Case against Perfection


Book Description

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.