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Human Genome Editing

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
Page : 329 pages
File Size : 12,17 MB
Release : 2017-08-13
Category : Medical
ISBN : 0309452880

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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.

The Ethics and Politics of Community Engagement in Global Health Research

Author : Lindsey Reynolds
Publisher : Routledge
Page : 201 pages
File Size : 33,37 MB
Release : 2020-06-09
Category : Medical
ISBN : 1000057879

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Drawing on a growing consensus about the importance of community representation and participation for ethical research, community engagement has become a central component of scientific research, policy-making, ethical review, and technology design. The diversity of actors involved in large-scale global health research collaborations and the broader ‘background conditions’ of global inequality and injustice that frame the field have led some researchers, funders, and policy-makers to conclude that community engagement is nothing less than a moral imperative in global health research. Rather than taking community engagement as a given, the contributions in this edited volume highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of engagement across diverse contexts, the book pushes conversations around engagement and participation beyond their conventional framings. In doing so, it raises radical questions about knowledge, power, expertise, authority, representation, inclusivity, and ethics and to make recommendations for more transformative, inclusive, and meaningful community engagement. This book was originally published as a special issue of the Critical Public Health journal.

Human Challenge Studies in Endemic Settings

Author : Euzebiusz Jamrozik
Publisher : Springer Nature
Page : 145 pages
File Size : 15,71 MB
Release : 2020
Category : Bioethics
ISBN : 3030414809

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This open access book provides an extensive review of ethical and regulatory issues related to human infection challenge studies, with a particular focus on the expansion of this type of research into endemic settings and/or low- and middle-income countries (LMICs). Human challenge studies (HCS) involve the intentional infection of research participants, and this type of research is rapidly increasing in frequency worldwide. HCS are widely considered to be an especially promising approach to vaccine development, including for pathogens endemic to LMICs. However, challenge studies are sometimes controversial and raise complex ethical issues, some of which are especially salient in endemic and/or LMIC settings. Informed by qualitative interviews with experts in infectious diseases and bioethics, this book highlights areas of ethical consensus and controversy concerning this kind of research. As the first volume to focus on ethical issues associated with human challenge studies, it sets the agenda for further work in this important area of global health research; contributes to current debates in research ethics; and aims to inform regulatory policy and research practice. Insofar as it focuses on HCS in (endemic) settings where diseases are present and/or widespread, much of the analysis provided here is directly relevant to HCS involving pandemic diseases including COVID19.

The National Children's Study Research Plan

Author : National Research Council
Publisher : National Academies Press
Page : 166 pages
File Size : 40,68 MB
Release : 2008-08-16
Category : Social Science
ISBN : 030912056X

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The National Children's Study (NCS) is planned to be the largest long-term study of environmental and genetic effects on children's health ever conducted in the United States. It proposes to examine the effects of environmental influences on the health and development of approximately 100,000 children across the United States, following them from before birth until age 21. By archiving all of the data collected, the NCS is intended to provide a valuable resource for analyses conducted many years into the future. This book evaluates the research plan for the NCS, by assessing the scientific rigor of the study and the extent to which it is being carried out with methods, measures, and collection of data and specimens to maximize the scientific yield of the study. The book concludes that if the NCS is conducted as proposed, the database derived from the study should be valuable for investigating hypotheses described in the research plan as well as additional hypotheses that will evolve. Nevertheless, there are important weaknesses and shortcomings in the research plan that diminish the study's expected value below what it might be.

Society's Choices

Author : Institute of Medicine
Publisher : National Academies Press
Page : 560 pages
File Size : 19,64 MB
Release : 1995-03-27
Category : Medical
ISBN : 0309051320

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Breakthroughs in biomedicine often lead to new life-giving treatments but may also raise troubling, even life-and-death, quandaries. Society's Choices discusses ways for people to handle today's bioethics issues in the context of America's unique history and cultureâ€"and from the perspectives of various interest groups. The book explores how Americans have grappled with specific aspects of bioethics through commission deliberations, programs by organizations, and other mechanisms and identifies criteria for evaluating the outcomes of these efforts. The committee offers recommendations on the role of government and professional societies, the function of commissions and institutional review boards, and bioethics in health professional education and research. The volume includes a series of 12 superb background papers on public moral discourse, mechanisms for handling social and ethical dilemmas, and other specific areas of controversy by well-known experts Ronald Bayer, Martin Benjamin, Dan W. Brock, Baruch A. Brody, H. Alta Charo, Lawrence Gostin, Bradford H. Gray, Kathi E. Hanna, Elizabeth Heitman, Thomas Nagel, Steven Shapin, and Charles M. Swezey.

Bioethics in Singapore

Author : John Elliott
Publisher : World Scientific
Page : 343 pages
File Size : 26,57 MB
Release : 2010
Category : Medical
ISBN : 9814327107

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The coming of bioethics to Singapore / W. Calvin Ho and Sylvia S.N. Lim -- The impact of the bioethics advisory committee on the research community in Singapore / Charmaine K.M. Chan and Edison T. Liu -- Engaging the public : the role of the media / Chang Ai-Lien and Judith Tan -- Confucian trust and the biomedical regulatory framework in Singapore / Anh Tuan Nuyen -- The clinician-researcher : a servant of two masters? / Alastair V. Campbell, Jacqueline Chin, and Teck Chuan Voo -- The US model for oversight of human stem cell research / Lindsay Parham and Bernard Lo -- Genetics and stem cell research : models of international policy-making / Bartha Maria Knoppers, Emily Kirby and Rosario Isasi -- Public engagement and bioethics commissions / Thomas H. Murray and Ross S. White -- Norm-making on human-animal chimeras and hybrids in Singapore, the United Kingdom and the international domain / W. Calvin Ho and Martin Bobrow -- How will future bioethical issues engage Singapore? / John Elliott