%0 Book %A National Academies of Sciences, Engineering, and Medicine %E Bain, Lisa %E Matney, Chanel %E Stroud, Clare %T Novel Molecular Targets for Mood Disorders and Psychosis: Proceedings of a Workshop %@ 978-0-309-68590-0 %D 2021 %U https://nap.nationalacademies.org/catalog/26218/novel-molecular-targets-for-mood-disorders-and-psychosis-proceedings-of %> https://nap.nationalacademies.org/catalog/26218/novel-molecular-targets-for-mood-disorders-and-psychosis-proceedings-of %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 88 %X Mood disorders - including depression and bipolar disorder - are common, disabling, and potentially lethal disorders, characterized by a shortened lifespan from comorbid medical illness and rising suicide rates. Medications for these conditions have been shown to be insufficiently effective in the majority of people who take them, and there remains a tremendous unmet medical need. Recent advances towards understanding the mechanisms of action for psychiatric medicines have led to the identification of potential novel molecular targets and agents for treating mood disorders. While these promising avenues for further investigation have re-energized scientific research in this area, many open questions remain. In response to this interest, the National Academies of Sciences, Engineering, and Medicine's Forum on Neuroscience and Nervous System Disorders convened a workshop in March 2021, Novel Molecular Targets for Mood Disorders and Psychosis. The goal of this workshop was to explore the landscape of novel pharmacologic treatments for psychiatric disorders, review the challenges and opportunities that have been highlighted by the development of recently approved drugs, and reflect on how to apply those lessons learned towards current and future efforts to identify and validate additional novel molecular targets. With a grounding in the personal experiences of patients living with depression and schizophrenia, workshop participants discussed the scientific, clinical, technological, regulatory, and ethical considerations of this topic. Examples of drug classes discussed in the workshop include antagonists for NMDA (N-methyl-D-aspartate) receptors and GABA (gamma-aminobutyric acid) receptors, as well as modulators for muscarinic and serotonergic receptors. This publication summarizes the presentations and discussions from the workshop. %0 Book %A National Academies of Sciences, Engineering, and Medicine %A National Academy of Medicine %T Toward Equitable Innovation in Health and Medicine: A Framework %@ 978-0-309-70761-9 %D 2023 %U https://nap.nationalacademies.org/catalog/27184/toward-equitable-innovation-in-health-and-medicine-a-framework %> https://nap.nationalacademies.org/catalog/27184/toward-equitable-innovation-in-health-and-medicine-a-framework %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 242 %X Advances in biomedical science, data science, engineering, and technology are leading to high-pace innovation with potential to transform health and medicine. These innovations simultaneously raise important ethical and social issues, including how to fairly distribute their benefits and risks. The National Academies of Sciences, Engineering, and Medicine, in collaboration with the National Academy of Medicine, established the Committee on Creating a Framework for Emerging Science, Technology, and Innovation in Health and Medicine to provide leadership and engage broad communities in developing a framework for aligning the development and use of transformative technologies with ethical and equitable principles. The committees resulting report describes a governance framework for decisions throughout the innovation life cycle to advance equitable innovation and support an ecosystem that is more responsive to the needs of a broader range of individuals and is better able to recognize and address inequities as they arise. %0 Book %A National Academies of Sciences, Engineering, and Medicine %E Keusch, Gerald %E McAdam, Keith %E Cuff, Patricia A. %E Mancher, Michelle %E Busta, Emily R. %T Integrating Clinical Research into Epidemic Response: The Ebola Experience %@ 978-0-309-45776-7 %D 2017 %U https://nap.nationalacademies.org/catalog/24739/integrating-clinical-research-into-epidemic-response-the-ebola-experience %> https://nap.nationalacademies.org/catalog/24739/integrating-clinical-research-into-epidemic-response-the-ebola-experience %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 342 %X The 2014–2015 Ebola epidemic in western Africa was the longest and most deadly Ebola epidemic in history, resulting in 28,616 cases and 11,310 deaths in Guinea, Liberia, and Sierra Leone. The Ebola virus has been known since 1976, when two separate outbreaks were identified in the Democratic Republic of Congo (then Zaire) and South Sudan (then Sudan). However, because all Ebola outbreaks prior to that in West Africa in 2014–2015 were relatively isolated and of short duration, little was known about how to best manage patients to improve survival, and there were no approved therapeutics or vaccines. When the World Heath Organization declared the 2014-2015 epidemic a public health emergency of international concern in August 2014, several teams began conducting formal clinical trials in the Ebola affected countries during the outbreak. Integrating Clinical Research into Epidemic Response: The Ebola Experience assesses the value of the clinical trials held during the 2014–2015 epidemic and makes recommendations about how the conduct of trials could be improved in the context of a future international emerging or re-emerging infectious disease events. %0 Book %A Institute of Medicine %E Harris, Tracy A. %T The U.S. Oral Health Workforce in the Coming Decade: Workshop Summary %@ 978-0-309-13904-5 %D 2009 %U https://nap.nationalacademies.org/catalog/12669/the-us-oral-health-workforce-in-the-coming-decade-workshop %> https://nap.nationalacademies.org/catalog/12669/the-us-oral-health-workforce-in-the-coming-decade-workshop %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 182 %X Access to oral health services is a problem for all segments of the U.S. population, and especially problematic for vulnerable populations, such as rural and underserved populations. The many challenges to improving access to oral health services include the lack of coordination and integration among the oral health, public health, and medical health care systems; misaligned payment and education systems that focus on the treatment of dental disease rather than prevention; the lack of a robust evidence base for many dental procedures and workforce models; and regulatory barriers that prevent the exploration of alternative models of care. This volume, the summary of a three-day workshop, evaluates the sufficiency of the U.S. oral health workforce to consider three key questions: What is the current status of access to oral health services for the U.S. population? What workforce strategies hold promise to improve access to oral health services? How can policy makers, state and federal governments, and oral health care providers and practitioners improve the regulations and structure of the oral health care system to improve access to oral health services? %0 Book %A National Research Council %T Recognition and Alleviation of Distress in Laboratory Animals %@ 978-0-309-10817-1 %D 2008 %U https://nap.nationalacademies.org/catalog/11931/recognition-and-alleviation-of-distress-in-laboratory-animals %> https://nap.nationalacademies.org/catalog/11931/recognition-and-alleviation-of-distress-in-laboratory-animals %I The National Academies Press %C Washington, DC %G English %K Biology and Life Sciences %P 136 %X Scientific advances in our understanding of animal physiology and behavior often require theories to be revised and standards of practice to be updated to improve laboratory animal welfare. This new book from the Institute for Laboratory Animal Research (ILAR) at the National Research Council, Recognition and Alleviation of Distress in Laboratory Animals, focuses on the stress and distress which is experienced by animals when used in laboratory research. This book aims to educate laboratory animal veterinarians; students, researchers, and investigators; animal care staff, as well as animal welfare officers on the current scientific and ethical issues associated with stress and distress in laboratory animals. It evaluates pertinent scientific literature to generate practical and pragmatic guidelines. Recognition and Alleviation of Distress in Laboratory Animals focuses specifically on the scientific understanding of the causes and the functions of stress and distress, the transformation of stress to distress, and the identification of principles for the recognition and alleviation of distress. This book discusses the role of humane endpoints in situations of distress and principles for the minimization of distress in laboratory animals. It also identifies areas in which further scientific investigation is needed to improve laboratory animal welfare in order to adhere to scientific and ethical principles that promote humane care and practice. %0 Book %A National Research Council %T Recognition and Alleviation of Pain in Laboratory Animals %@ 978-0-309-12834-6 %D 2009 %U https://nap.nationalacademies.org/catalog/12526/recognition-and-alleviation-of-pain-in-laboratory-animals %> https://nap.nationalacademies.org/catalog/12526/recognition-and-alleviation-of-pain-in-laboratory-animals %I The National Academies Press %C Washington, DC %G English %K Biology and Life Sciences %P 198 %X The use of animals in research adheres to scientific and ethical principles that promote humane care and practice. Scientific advances in our understanding of animal physiology and behavior often require theories to be revised and standards of practice to be updated to improve laboratory animal welfare. Recognition and Alleviation of Pain in Laboratory Animals, the second of two reports revising the 1992 publication Recognition and Alleviation of Pain and Distress in Laboratory Animals from the Institute for Laboratory Animal Research (ILAR), focuses on pain experienced by animals used in research. This book aims to educate laboratory animal veterinarians; students, researchers and investigators; Institutional Animal Care and Use Committee members; and animal care staff and animal welfare officers on the current scientific and ethical issues associated with pain in laboratory animals. It evaluates pertinent scientific literature to generate practical and pragmatic guidelines for recognizing and alleviating pain in laboratory animals, focusing specifically on the following areas: physiology of pain in commonly used laboratory species; pharmacologic and non-pharmacologic principles to control pain; identification of humane endpoints; and principles for minimizing pain associated with experimental procedures. Finally, the report identifies areas in which further scientific investigation is needed to improve laboratory animal welfare. %0 Book %A National Academies of Sciences, Engineering, and Medicine %T Rapid Expert Consultation on Crisis Standards of Care for the COVID-19 Pandemic (March 28, 2020) %D 2020 %U https://nap.nationalacademies.org/catalog/25765/rapid-expert-consultation-on-crisis-standards-of-care-for-the-covid-19-pandemic-march-28-2020 %> https://nap.nationalacademies.org/catalog/25765/rapid-expert-consultation-on-crisis-standards-of-care-for-the-covid-19-pandemic-march-28-2020 %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 9 %X This rapid expert consultation responds to a request from the Office of Science and Technology Policy (OSTP) concerning the implementation of crisis standards of care (CSC) in response to the COVID-19 outbreak. Building on a 10-year foundation of work by the Institute of Medicine, this document summarizes the broad principles and core elements of CSC planning and implementation. The National Academies of Sciences, Engineering, and Medicine convened a standing committee of experts to help inform OSTP on critical science and policy issues related to emerging infectious diseases and other public health threats. The standing committee includes members with expertise in emerging infectious diseases, public health, public health preparedness and response, biological sciences, clinical care and crisis standards of care, risk communication, and regulatory issues. %0 Book %A National Academies of Sciences, Engineering, and Medicine %E Rand, Leah %E Dickert, Neal %T Framework for Addressing Ethical Dimensions of Emerging and Innovative Biomedical Technologies: A Synthesis of Relevant National Academies Reports %D 2019 %U https://nap.nationalacademies.org/catalog/25491/framework-for-addressing-ethical-dimensions-of-emerging-and-innovative-biomedical-technologies %> https://nap.nationalacademies.org/catalog/25491/framework-for-addressing-ethical-dimensions-of-emerging-and-innovative-biomedical-technologies %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 13 %X Over the past 15 years, the National Academies of Sciences, Engineering, and Medicine (the National Academies) have convened multiple committees of leading experts to address ethical challenges related to innovative and emerging biomedical technologies. After reviewing prior National Academies' reports, individual ethics principles and considerations were identified and grouped into sets of related considerations to establish guidelines for future studies. Framework for Addressing Ethical Dimensions of Emerging and Innovative Biomedical Technologies provides a synopsis of principal ethical commitments and core values that characterize the National Academies' work in the domain of emerging biomedical technologies. This publication offers a synthesis of relevant National Academies' reports. %0 Book %A National Academies of Sciences, Engineering, and Medicine %E Childress, James F. %E Domnitz, Sarah %E Liverman, Catharyn T. %T Opportunities for Organ Donor Intervention Research: Saving Lives by Improving the Quality and Quantity of Organs for Transplantation %@ 978-0-309-46487-1 %D 2017 %U https://nap.nationalacademies.org/catalog/24884/opportunities-for-organ-donor-intervention-research-saving-lives-by-improving %> https://nap.nationalacademies.org/catalog/24884/opportunities-for-organ-donor-intervention-research-saving-lives-by-improving %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 170 %X The organ donation and transplantation system strives to honor the gift of donated organs by fully using those organs to save and improve the quality of the lives of their recipients. However, there are not enough donated organs to meet the demand and some donated organs may not be recovered, some recovered organs may not be transplanted, and some transplanted organs may not function adequately. Organ donor intervention research can test and assess interventions (e.g., medications, devices, and donor management protocols) to maintain or improve organ quality prior to, during, and following transplantation. The intervention is administered either while the organ is still in the deceased donor or after it is recovered from the donor but before it is transplanted into a recipient. Organ donor intervention research presents new challenges to the organ donation and transplantation community because of ethical questions about who should be considered a human subject in a research study, whose permission and oversight are needed, and how to ensure that such research does not threaten the equitable distribution of a scarce and valuable resource. Opportunities for Organ Donor Intervention Research focuses on the ethical, legal, regulatory, policy, and organizational issues relevant to the conduct of research in the United States involving deceased organ donors. This report provides recommendations for how to conduct organ donor intervention research in a manner that maintains high ethical standards, that ensures dignity and respect for deceased organ donors and their families, that provides transparency and information for transplant candidates who might receive a research organ, and that supports and sustains the public's trust in the process of organ donation and transplantation. %0 Book %A Institute of Medicine %E Potts, John T. %E Herdman, Roger %T Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement %@ 978-0-309-06424-8 %D 1997 %U https://nap.nationalacademies.org/catalog/6036/non-heart-beating-organ-transplantation-medical-and-ethical-issues-in %> https://nap.nationalacademies.org/catalog/6036/non-heart-beating-organ-transplantation-medical-and-ethical-issues-in %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 104 %X Non-heart-beating donors (individuals whose deaths are determined by cessation of heart and respiratory function rather than loss of whole brain function) could potentially be of major importance in reducing the gap between the demand for and available supply of organs for transplantation. Prompted by questions concerning the medical management of such donors—specifically, whether interventions undertaken to enhance the supply and quality of potentially transplantable organs (i.e. the use of anticoagulants and vasodilators) were in the best interests of the donor patient—the U.S. Department of Health and Human Services asked the Institute of Medicine to examine from scientific and ethical points of view "alternative medical approaches that can be used to maximize the availability of organs from [a] donor [in an end-of-life situation] without violating prevailing ethical norms...." This book examines transplantation supply and demand, historical and modern conceptions of non-heart-beating donors, and organ procurement organizations and transplant program policies, and contains recommendations concerning the principles and ethical issues surrounding the topic. %0 Book %A National Research Council %T Education and Training in the Care and Use of Laboratory Animals: A Guide for Developing Institutional Programs %@ 978-0-309-04382-3 %D 1991 %U https://nap.nationalacademies.org/catalog/1592/education-and-training-in-the-care-and-use-of-laboratory-animals %> https://nap.nationalacademies.org/catalog/1592/education-and-training-in-the-care-and-use-of-laboratory-animals %I The National Academies Press %C Washington, DC %G English %K Biology and Life Sciences %P 152 %X Federal law now requires that institutions provide training for anyone caring for or using laboratory animals. This volume provides the guidelines and resources needed to coordinate a quality training program, as well as to meet all legal requirements. A core module for all personnel takes no more than four hours to present. Most staff then proceed to one or more additional skills-development modules including the species-specific module that can be customized to any species in use at the institution, the pain management module, and the surgery module. The volume provides content information for required topics—from ethics to record keeping—and lists sources of additional publications, audiovisual programs, and computerized teaching aids. Included are: Ready-to-use teaching outlines, with detailed instructions for presenting material. Practical guidelines on logistics, covering scheduling, budgeting, and more. Guidelines on how to design training for adults and how to work with investigators who may resist taking training courses. This practical guidebook will be necessary for research institutions, particularly for staff members responsible for training coordination. %0 Book %A Institute of Medicine %T Preserving Public Trust: Accreditation and Human Research Participant Protection Programs %@ 978-0-309-07328-8 %D 2001 %U https://nap.nationalacademies.org/catalog/10085/preserving-public-trust-accreditation-and-human-research-participant-protection-programs %> https://nap.nationalacademies.org/catalog/10085/preserving-public-trust-accreditation-and-human-research-participant-protection-programs %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 232 %X Amid increasing concern for patient safety and the shutdown of prominent research operations, the need to improve protections for individuals who volunteer to participate in research has become critical. Preserving Public Trust: Accreditation and Human Research Participant Protection Programs considers the possible impact of creating an accreditation system to raise the performance of local protection mechanisms. In the United States, the system for human research participant protections has centered on the Institutional Review Board (IRB); however, this report envisions a broader system with multiple functional elements. In this context, two draft sets of accreditation standards are reviewed (authored by Public Responsibility in Medicine & Research and the National Committee for Quality Assurance) for their specific content in core areas, as well as their objectivity and validity as measurement tools. The recommendations in the report support the concept of accreditation as a quality improvement strategy, suggesting that the model should be initially pursued through pilot testing of the proposed accreditation programs. %0 Book %A Institute of Medicine %E Weisfeld, Neil E. %E Weisfeld, Victoria D. %E Liverman, Catharyn T. %T Military Medical Ethics: Issues Regarding Dual Loyalties: Workshop Summary %@ 978-0-309-12663-2 %D 2009 %U https://nap.nationalacademies.org/catalog/12478/military-medical-ethics-issues-regarding-dual-loyalties-workshop-summary %> https://nap.nationalacademies.org/catalog/12478/military-medical-ethics-issues-regarding-dual-loyalties-workshop-summary %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 74 %X Dual loyalties exist in many medical fields, from occupational health to public health. Military health professionals, as all health professionals, are ethically responsible for their patients' well-being. In some situations, however, military health professionals can face unique ethical tensions between responsibilities to individual patients and responsibilities to military operations. This book summarizes the one-day workshop, Military Medical Ethics: Issues Regarding Dual Loyalties, which brought together academic, military, human rights, and health professionals to discuss these ethical challenges. The workshop examined two case studies: decisions regarding returning a servicemember to duty after a closed head injury, and decisions on actions by health professionals regarding a hunger strike by detainees. The workshop also addressed the need for improvements in medical ethics training and outlined steps for organizations to take in supporting better ethical awareness and use of ethical standards. %0 Book %T Letter Report: Protecting Participants in Behavioral and Social Science Research %D 2002 %U https://nap.nationalacademies.org/catalog/10427/letter-report-protecting-participants-in-behavioral-and-social-science-research %> https://nap.nationalacademies.org/catalog/10427/letter-report-protecting-participants-in-behavioral-and-social-science-research %I The National Academies Press %C Washington, DC %G English %P 12 %0 Book %A National Academies of Sciences, Engineering, and Medicine %E Taylor, Rachel M. %T Exploring Partnership Governance in Global Health: Proceedings of a Workshop–in Brief %D 2018 %U https://nap.nationalacademies.org/catalog/24997/exploring-partnership-governance-in-global-health-proceedings-of-a-workshop %> https://nap.nationalacademies.org/catalog/24997/exploring-partnership-governance-in-global-health-proceedings-of-a-workshop %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 9 %X On October 26, 2017, the National Academies of Sciences, Engineering, and Medicine's Forum on Public–Private Partnerships for Global Health and Safety convened a workshop on the governance of global health partnerships. Collaboration, a common approach in both 21st-century engineering and global health, brings together the talents, experiences, and resources of multiple sectors, and the diversity of these sectors leads to creative solutions for tackling system challenges. In global health, collaboration frequently occurs through public–private partnerships (PPPs), with public and private parties sharing risks, responsibilities, and decision-making processes with the objective of collectively and more effectively addressing a common goal. PPPs include government and industry as well as partners from a range of other sectors. The workshop examined what role governance assumes in global health PPPs through presentations and discussion on transparency and accountability, operational challenges, legal considerations, barriers and strategies for engagement, examples of governance structures and lessons learned, and measurement. This publication briefly summarizes the presentations and discussions from the workshop. %0 Book %A Institute of Medicine %E Mastroianni, Anna C. %E Faden, Ruth %E Federman, Daniel %T Women and Health Research: Ethical and Legal Issues of Including Women in Clinical Studies, Volume 1 %@ 978-0-309-04992-4 %D 1994 %U https://nap.nationalacademies.org/catalog/2304/women-and-health-research-ethical-and-legal-issues-of-including %> https://nap.nationalacademies.org/catalog/2304/women-and-health-research-ethical-and-legal-issues-of-including %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %P 288 %X In the nineteenth century some scientists argued that women should not be educated because thinking would use energy needed by the uterus for reproduction. The proof? Educated women had a lower birth rate. Today's researchers can only shake their heads at such reasoning. Yet professional journals and the popular press are increasingly criticizing medical research for ignoring women's health issues. Women and Health Research examines the facts behind the public's perceptions about women participating as subjects in medical research. With the goal of increasing researchers' awareness of this important topic, the book explores issues related to maintaining justice (in its ethical sense) in clinical studies. Leading experts present general principles for the ethical conduct of research on women—principles that are especially important in the light of recent changes in federal policy on the inclusion of women in clinical research. Women and Health Research documents the historical shift from a paternalistic approach by researchers toward women and a disproportionate reliance on certain groups for research to one that emphasizes proper access for women as subjects in clinical studies in order to ensure that women receive the benefits of research. The book addresses present-day challenges to equity in four areas: Scientific—Do practical aspects of scientific research work at cross-purposes to gender equity? Focusing on drug trials, the authors identify rationales for excluding people from research based on demographics. Social and Ethical—The authors offer compelling discussions on subjectivity in science, the evidence for male bias, and issues related to race and ethnicity, as well as the recruitment, retention, and protection of research participants. Legal—Women and Health Research reviews federal research policies that affect the inclusion of women and evaluates the basis for researchers' fears about liability, citing court cases. Risk—The authors focus on risks to reproduction and offspring in clinical drug trials, exploring how risks can be identified for study participants, who should make the assessment of risk and benefit for participation in a clinical study, and how legal implications could be addressed. This landmark study will be of immediate use to the research community, policymakers, women's health advocates, attorneys, and individuals. %0 Book %A Institute of Medicine %E Field, Marilyn J. %E Behrman, Richard E. %T Ethical Conduct of Clinical Research Involving Children %@ 978-0-309-09181-7 %D 2004 %U https://nap.nationalacademies.org/catalog/10958/ethical-conduct-of-clinical-research-involving-children %> https://nap.nationalacademies.org/catalog/10958/ethical-conduct-of-clinical-research-involving-children %I The National Academies Press %C Washington, DC %G English %K Health and Medicine %K Policy for Science and Technology %P 445 %X In recent decades, advances in biomedical research have helped save or lengthen the lives of children around the world. With improved therapies, child and adolescent mortality rates have decreased significantly in the last half century. Despite these advances, pediatricians and others argue that children have not shared equally with adults in biomedical advances. Even though we want children to benefit from the dramatic and accelerating rate of progress in medical care that has been fueled by scientific research, we do not want to place children at risk of being harmed by participating in clinical studies. Ethical Conduct of Clinical Research Involving Children considers the necessities and challenges of this type of research and reviews the ethical and legal standards for conducting it. It also considers problems with the interpretation and application of these standards and conduct, concluding that while children should not be excluded from potentially beneficial clinical studies, some research that is ethically permissible for adults is not acceptable for children, who usually do not have the legal capacity or maturity to make informed decisions about research participation. The book looks at the need for appropriate pediatric expertise at all stages of the design, review, and conduct of a research project to effectively implement policies to protect children. It argues persuasively that a robust system for protecting human research participants in general is a necessary foundation for protecting child research participants in particular. %0 Book %A National Research Council %E Gutmann, Myron P. %E Stern, Paul C. %T Putting People on the Map: Protecting Confidentiality with Linked Social-Spatial Data %@ 978-0-309-10414-2 %D 2007 %U https://nap.nationalacademies.org/catalog/11865/putting-people-on-the-map-protecting-confidentiality-with-linked-social %> https://nap.nationalacademies.org/catalog/11865/putting-people-on-the-map-protecting-confidentiality-with-linked-social %I The National Academies Press %C Washington, DC %G English %K Computers and Information Technology %P 176 %X Precise, accurate spatial information linked to social and behavioral data is revolutionizing social science by opening new questions for investigation and improving understanding of human behavior in its environmental context. At the same time, precise spatial data make it more likely that individuals can be identified, breaching the promise of confidentiality made when the data were collected. Because norms of science and government agencies favor open access to all scientific data, the tension between the benefits of open access and the risks associated with potential breach of confidentiality pose significant challenges to researchers, research sponsors, scientific institutions, and data archivists. Putting People on the Map finds that several technical approaches for making data available while limiting risk have potential, but none is adequate on its own or in combination. This book offers recommendations for education, training, research, and practice to researchers, professional societies, federal agencies, institutional review boards, and data stewards. %0 Book %A National Research Council %E Durrant, Valerie L. %E Menken, Jane %T Leveraging Longitudinal Data in Developing Countries: Report of a Workshop %@ 978-0-309-08450-5 %D 2002 %U https://nap.nationalacademies.org/catalog/10405/leveraging-longitudinal-data-in-developing-countries-report-of-a-workshop %> https://nap.nationalacademies.org/catalog/10405/leveraging-longitudinal-data-in-developing-countries-report-of-a-workshop %I The National Academies Press %C Washington, DC %G English %K Behavioral and Social Sciences %K Health and Medicine %P 114 %X Longitudinal data collection and analysis are critical to social, demographic, and health research, policy, and practice. They are regularly used to address questions of demographic and health trends, policy and program evaluation, and causality. Panel studies, cohort studies, and longitudinal community studies have proved particularly important in developing countries that lack vital registration systems and comprehensive sources of information on the demographic and health situation of their populations. Research using data from such studies has led to scientific advances and improvements in the well-being of individuals in developing countries. Yet questions remain about the usefulness of these studies relative to their expense (and relative to cross-sectional surveys) and about the appropriate choice of alternative longitudinal strategies in different contexts.For these reasons, the Committee on Population convened a workshop to examine the comparative strengths and weaknesses of various longitudinal approaches in addressing demographic and health questions in developing countries and to consider ways to strengthen longitudinal data collection and analysis. This report summarizes the discussion and opinions voiced at that workshop. %0 Book %A National Academies of Sciences, Engineering, and Medicine %E Olson, Steve %T Third International Summit on Human Genome Editing: Expanding Capabilities, Participation, and Access: Proceedings of a Workshop—in Brief %D 2023 %U https://nap.nationalacademies.org/catalog/27066/third-international-summit-on-human-genome-editing-expanding-capabilities-participation %> https://nap.nationalacademies.org/catalog/27066/third-international-summit-on-human-genome-editing-expanding-capabilities-participation %I The National Academies Press %C Washington, DC %G English %K Biology and Life Sciences %P 14 %X On March 6-8, 2023, at the Francis Crick Institute in London, the UK Royal Society and Academy of Medical Sciences, the U.S. National Academy of Sciences and National Academy of Medicine, and UNESCO-The World Academy of Sciences held the Third International Summit on Human Genome Editing. A follow-up to earlier international summits held in Washington, DC, in 2015 and in Hong Kong in 2018, the third summit examined scientific advances that have occurred since the previous summits and the need for global dialogue and collaboration on the safe and ethical application of human genome editing. The first two days of the summit focused largely on somatic human genome editing, where the cells being altered are non-reproductive cells - as a result genetic changes cannot be passed on to future generations. The third day of the summit broadened the discussion to include heritable human genome editing, in which genetic changes could be passed on to descendants. This publication highlights the presentations and discussion of the event.