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Immigrant children and youth are the fastest-growing segment of the U.S. population, and so their prospects bear heavily on the well-being of the country. Children of Immigrants represents some of the very best and most extensive research efforts to date on the circumstances, health, and development of children in immigrant families and the delivery of health and social services to these children and their families.This book presents new, detailed analyses of more than a dozen existing datasets that constitute a large share of the national system for monitoring the health and well-being of the U.S. population. Prior to these new analyses, few of these datasets had been used to assess the circumstances of children in immigrant families. The analyses enormously expand the available knowledge about the physical and mental health status and risk behaviors, educational experiences and outcomes, and socioeconomic and demographic circumstances of first- and second-generation immigrant children, compared with children with U.S.-born parents.
Since about 1980, asthma prevalence and asthma-related hospitalizations and deaths have increased substantially, especially among children. Of particular concern is the high mortality rate among African Americans with asthma. Recent studies have suggested that indoor exposures--to dust mites, cockroaches, mold, pet dander, tobacco smoke, and other biological and chemical pollutants--may influence the disease course of asthma. To ensure an appropriate response, public health and education officials have sought a science-based assessment of asthma and its relationship to indoor air exposures. Clearing the Air meets this need. This book examines how indoor pollutants contribute to asthma-- its causation, prevalence, triggering, and severity. The committee discusses asthma among the general population and in sensitive subpopulations including children, low-income individuals, and urban residents. Based on the most current findings, the book also evaluates the scientific basis for mitigating the effects of indoor air pollutants implicated in asthma. The committee identifies priorities for public health policy, public education outreach, preventive intervention, and further research.
On February 5, 2015, the Institute of Medicine Roundtable on Population Health Improvement hosted a workshop to explore the relationship between public health and health care, including opportunities, challenges, and practical lessons. The workshop was convened in partnership with the Association of State and Territorial Health Officials (ASTHO)-Supported Primary Care and Public Health Collaborative. Organized in response to the 2012 IOM report Primary Care and Public Health: Exploring Integration to Improve Population Health, this workshop focused on current issues at the interface of public health and health care, including opportunities presented by and lessons learned from the Centers for Medicaid and Medicare Services State Innovation Models program. The workshop featured presentations on several dimensions of the public health-health care relationship. Collaboration Between Health Care and Public Health summarizes the presentations and discussion of the event.
The health and economic costs of tobacco use in military and veteran populations are high. In 2007, the Department of Veterans Affairs (VA) and the Department of Defense (DoD) requested that the Institute of Medicine (IOM) make recommendations on how to reduce tobacco initiation and encourage cessation in both military and veteran populations. In its 2009 report, Combating Tobacco in Military and Veteran Populations, the authoring committee concludes that to prevent tobacco initiation and encourage cessation, both DoD and VA should implement comprehensive tobacco-control programs.
Subtitle: Activity Report, April 1, 1992 Through November 30, 1994: Food and Nutrition Board, Institute of Medicine General Books publication date: 2009 Original publication date: 1994 Original Publisher: National Academy Press Subjects: Health
In the last 25 years, a major shift has occurred in the field of violence prevention, from the assumption that violence is inevitable to the realization that violence is preventable. As we learn more about what works to reduce violence, the challenge facing those who work in the field is how to use all of this new information to rapidly deploy or enhance new programs. At the same time, new communications technologies and distribution channels have altered traditional means of communications, and have made community-based efforts to prevent violence possible by making information readily available. How can these new technologies be successfully applied to the field of violence prevention? On December 8-9, 2011, the IOM's Forum on Global Violence Prevention held a workshop to explore the intersection of violence prevention and information and communications technology. The workshop - called "mPreventViolence" - provided an opportunity for practitioners to engage in new and innovative thinking concerning these two fields with the goal of bridging gaps in language, processes, and mechanisms. The workshop focused on exploring the potential applications of technology to violence prevention, drawing on experience in development, health, and the social sector as well as from industry and the private sector. Communication and Technology for Violence Prevention: Workshop Summary is the report that fully explains this workshop.
Collaborations of physicians and researchers with industry can provide valuable benefits to society, particularly in the translation of basic scientific discoveries to new therapies and products. Recent reports and news stories have, however, documented disturbing examples of relationships and practices that put at risk the integrity of medical research, the objectivity of professional education, the quality of patient care, the soundness of clinical practice guidelines, and the public's trust in medicine. Conflict of Interest in Medical Research, Education, and Practice provides a comprehensive look at conflict of interest in medicine. It offers principles to inform the design of policies to identify, limit, and manage conflicts of interest without damaging constructive collaboration with industry. It calls for both short-term actions and long-term commitments by institutions and individuals, including leaders of academic medical centers, professional societies, patient advocacy groups, government agencies, and drug, device, and pharmaceutical companies. Failure of the medical community to take convincing action on conflicts of interest invites additional legislative or regulatory measures that may be overly broad or unduly burdensome. Conflict of Interest in Medical Research, Education, and Practice makes several recommendations for strengthening conflict of interest policies and curbing relationships that create risks with little benefit. The book will serve as an invaluable resource for individuals and organizations committed to high ethical standards in all realms of medicine.
Every day in the United States, children and adolescents are victims of commercial sexual exploitation and sex trafficking. Despite the serious and long-term consequences for victims as well as their families, communities, and society, efforts to prevent, identify, and respond to these crimes are largely under supported, inefficient, uncoordinated, and unevaluated. Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States examines commercial sexual exploitation and sex trafficking of U.S. citizens and lawful permanent residents of the United States under age 18. According to this report, efforts to prevent, identify, and respond to these crimes require better collaborative approaches that build upon the capabilities of people and entities from a range of sectors. In addition, such efforts need to confront demand and the individuals who commit and benefit from these crimes. The report recommends increased awareness and understanding, strengthening of the law's response, strengthening of research to advance understanding and to support the development of prevention and intervention strategies, support for multi-sector and interagency collaboration, and creation of a digital information-sharing platform. A nation that is unaware of these problems or disengaged from solutions unwittingly contributes to the ongoing abuse of minors. If acted upon in a coordinated and comprehensive manner, the recommendations of Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States can help advance and strengthen the nation's emerging efforts to prevent, identify, and respond to commercial sexual exploitation and sex trafficking of minors in the United States.
Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States: A Guide for Providers of Victim and Support Servicesby Institute of Medicine
Commercial sexual exploitation and sex trafficking of minors in the United States are frequently overlooked, misunderstood, and unaddressed domestic problems. In the past decade, they have received increasing attention from advocates, the media, academics, and policy makers. However, much of this attention has focused internationally. This international focus has overshadowed the reality that commercial sexual exploitation and sex trafficking of minors also occur every day within the United States. Commercial sexual exploitation and sex trafficking of minors not only are illegal activities, but also result in immediate and long-term physical, mental, and emotional harm to victims and survivors. A nation that is unaware of these problems or disengaged from solving them unwittingly contributes to the ongoing abuse of minors and all but ensures that these crimes will remain marginalized and misunderstood. The 2013 Institute of Medicine and the National Research Council report Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States increases awareness and understanding of the crucial problem of commercial sexual exploitation and sex trafficking of minors in the United States. By examining emerging strategies for preventing and identifying these crimes, for assisting and supporting victims and survivors, and for addressing exploiters and traffickers, that report offers a path forward through recommendations designed to increase awareness and understanding and to support efforts to prevent, identify, and respond to these crimes. Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States: A Guide for Providers of Victim and Support Services offers a more concise and focused perspective on the problem and emerging solutions for providers of victim and support services for children and adolescents. These service providers include policy makers, leaders, practitioners, organizations, and programs at the local, state, and federal levels. This guide will be a valuable resource for them, and for child welfare and child protective services, other agencies and programs within the state and federal governments (e. g. , the U. S. Department of Justice's Office for Victims of Crime), and nongovernmental organizations.
Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States: A Guide for the Health Care Sectorby Institute of Medicine
Every day in the United States, children and adolescents are victims of commercial sexual exploitation and sex trafficking. These are not only illegal activities, but also forms of violence and abuse that result in immediate and long-term physical, mental, and emotional harm to victims and survivors. In 2013, the Institute of Medicine/National Research Council released the report Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States. The report found that the United States is in the very early stages of recognizing, understanding, and developing solutions for these crimes. Health care professionals need to be able to recognize past, ongoing, or potential victimization by commercial sexual exploitation and sex trafficking among the youth in their care. Failure to do so increases the possibility that those at risk may become victims, and victims may miss opportunities for assistance and remain vulnerable to further exploitation and abuse. This Guide for the Health Care Sector provides a summary of information from the original report that is most relevant to individuals who and settings that see children and adolescents for prevention and treatment of injury, illness, and disease. This includes physicians, nurses, advanced practice nurses, physician assistants, mental health professionals, and dentists who practice in settings such as emergency departments, urgent care, primary care clinics, adolescent medicine clinics, school clinics, shelters, community health centers, and dental clinics among others. This guide includes definitions of key terms and an overview of risk factors and consequences; barriers to identifying victims and survivors as well as opportunities for overcoming these barriers; examples of current practices in the health care sector; and recommendations aimed at identifying, preventing, and responding to these crimes.
Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States: A Guide for the Legal Sectorby Institute of Medicine
Every day in the United States, children and adolescents are victims of commercial sexual exploitation and sex trafficking. These are not only illegal activities, but also forms of violence and abuse that result in immediate and long-term physical, mental, and emotional harm to victims and survivors. In 2013, the Institute of Medicine/National Research Council released the report Confronting Commercial Sexual Exploitation and Sex Trafficking of Minors in the United States. The report found that the United States is in the very early stages of recognizing, understanding, and developing solutions for these crimes. Law enforcement professionals, attorneys, and judges all have important roles to play in responding to commercial sexual exploitation and sex trafficking of minors in the United States. Their knowledge and ability to identify victims, investigate cases, and make appropriate referrals is crucial to the development of an overall response to these crimes. This Guide for the Legal Sector provides a summary of information from the original report that is most relevant to individuals within the legal sector who interact in some way with victims, survivors, and perpetrators of commercial sexual exploitation and sex trafficking of minors. This includes federal, state, county, local, and tribal law enforcement agencies; police officers and investigators; probation officers; parole officers; corrections officers; prosecutors and defense attorneys; victim advocates; and judges. This guide includes definitions of key terms and an overview of risk factors and consequences; noteworthy examples of efforts by law enforcement personnel, attorneys, the juvenile and criminal justice systems, and the judiciary; multisector and interagency efforts in which the legal sector plays an important role; and recommendations aimed at identifying, preventing, and responding to these crimes.
Health care quality and its affordability have become very pressing issues in the United States. All sectors of the country are attempting to push forward initiatives that will improve the health care system as well as the health of the American population in general. Despite the economical dedication to health care, about 1/5, the system remains uneven and fragmented, patient harm is quite common, care is often uncoordinated, and many more mishaps occur. There exists many obstacles to improve the nation's health care system; these include the capacity to reliably and consistently measure progress. In 2006 the Institute of Medicine (IOM) established the Roundtable on Value & Science-Driven Health Care which has since accelerated the development of a learning health system- one in which science, informatics, incentives, and culture are aligned to create a continuous learning loop. This learning loop would thus help make the health care system better. In response, the IOM organized a 2-day workshop to explore in depth the core measurement needs for population health, health care quality, and health care costs. The workshop hoped to gain a full understanding of how to improve the nation's measurement capacity to track progress in the health care system. Having this knowledge would help the nation get one step closer to the creation of an efficient learning loop. The workshop was divided into a series of sessions that focused on different aspects of measurement. Core Measurement Needs for Better Care, Better Health, and Lower Costs: Counting What Counts: Workshop Summary includes explanations and key details for these sessions: Vision, Current Measurement Capabilities, Specifying the Shape of a Core Metric Set, and Implementation. The report also features common themes within these areas, the workshop agenda, and information about those involved.
A 2010 IOM report, Promoting Cardiovascular Health in the Developing World, found that not only is it possible to reduce the burden of cardiovascular disease and related chronic diseases in developing countries, but also that such a reduction will be critical to achieving global health and development goals. As part a series of follow-up activities to the 2010 report, the IOM held a workshop that aimed to identify what is needed to create tools for country-led planning of effective, efficient, and equitable provision of chronic disease control programs.
Roughly 40 million Americans have no health insurance, private or public, and the number has grown steadily over the past 25 years. Who are these children, women, and men, and why do they lack coverage for essential health care services? How does the system of insurance coverage in the U.S. operate, and where does it fail? The first of six Institute of Medicine reports that will examine in detail the consequences of having a large uninsured population, Coverage Matters: Insurance and Health Care, explores the myths and realities of who is uninsured, identifies social, economic, and policy factors that contribute to the situation, and describes the likelihood faced by members of various population groups of being uninsured. It serves as a guide to a broad range of issues related to the lack of insurance coverage in America and provides background data of use to policy makers and health services researchers.
Creating Equal Opportunities for a Healthy Weight is the summary of a workshop convened by the Institute of Medicine's Standing Committee on Childhood Obesity Prevention in June 2013 to examine income, race, and ethnicity, and how these factors intersect with childhood obesity and its prevention. Registered participants, along with viewers of a simultaneous webcast of the workshop, heard a series of presentations by researchers, policy makers, advocates, and other stakeholders focused on health disparities associated with income, race, ethnicity, and other characteristics and on how these factors intersect with obesity and its prevention. The workshop featured invited presentations and discussions concerning physical activity, healthy food access, food marketing and messaging, and the roles of employers, health care professionals, and schools. The IOM 2012 report Accelerating Progress in Obesity Prevention acknowledged that a variety of characteristics linked historically to social exclusion or discrimination, including race, ethnicity, religion, socioeconomic status, gender, age, mental health, disability, sexual orientation or gender identity, geographic location, and immigrant status, can thereby affect opportunities for physical activity, healthy eating, health care, work, and education. In many parts of the United States, certain racial and ethnic groups and low-income individuals and families live, learn, work, and play in places that lack health-promoting resources such as parks, recreational facilities, high-quality grocery stores, and walkable streets. These same neighborhoods may have characteristics such as heavy traffic or other unsafe conditions that discourage people from walking or being physically active outdoors. The combination of unhealthy social and environmental risk factors, including limited access to healthy foods and opportunities for physical activity, can contribute to increased levels of chronic stress among community members, which have been linked to increased levels of sedentary activity and increased calorie consumption. Creating Equal Opportunities for a Healthy Weight focuses on the key obesity prevention goals and recommendations outlined in Accelerating Progress in Obesity Prevention through the lens of health equity. This report explores critical aspects of obesity prevention, while discussing potential future research, policy, and action that could lead to equity in opportunities to achieve a healthy weight.
Disasters and public health emergencies can stress health care systems to the breaking point and disrupt delivery of vital medical services. During such crises, hospitals and long-term care facilities may be without power; trained staff, ambulances, medical supplies and beds could be in short supply; and alternate care facilities may need to be used. Planning for these situations is necessary to provide the best possible health care during a crisis and, if needed, equitably allocate scarce resources. Crisis Standards of Care: A Toolkit for Indicators and Triggers examines indicators and triggers that guide the implementation of crisis standards of care and provides a discussion toolkit to help stakeholders establish indicators and triggers for their own communities. Together, indicators and triggers help guide operational decision making about providing care during public health and medical emergencies and disasters. Indicators and triggers represent the information and actions taken at specific thresholds that guide incident recognition, response, and recovery. This report discusses indicators and triggers for both a slow onset scenario, such as pandemic influenza, and a no-notice scenario, such as an earthquake. Crisis Standards of Care features discussion toolkits customized to help various stakeholders develop indicators and triggers for their own organizations, agencies, and jurisdictions. The toolkit contains scenarios, key questions, and examples of indicators, triggers, and tactics to help promote discussion. In addition to common elements designed to facilitate integrated planning, the toolkit contains chapters specifically customized for emergency management, public health, emergency medical services, hospital and acute care, and out-of-hospital care.
In 2006 the National Institutes of Health (NIH) established the Clinical and Translational Science Awards (CTSA) Program, recognizing the need for a new impetus to encourage clinical and translational research. At the time it was very difficult to translate basic and clinical research into clinical and community practice; making it difficult for individual patients and communities to receive its benefits. Since its creation the CTSA Program has expanded, with 61 sites spread across the nation's academic health centers and other institutions, hoping to provide catalysts and test beds for policies and practices that can benefit clinical and translation research organizations throughout the country. The NIH contracted with the Institute of Medicine (IOM) in 2012 to conduct a study to assess and provide recommendations on appropriateness of the CTSA Program's mission and strategic goals and whether changes were needed. The study was also address the implementation of the program by the National Center for Advancing Translational Sciences (NCATS) while exploring the CTSA's contributions in the acceleration of the development of new therapeutics. A 13-member committee was established to head this task; the committee had collective expertise in community outreach and engagement, public health and health policy, bioethics, education and training, pharmaceutical research and development, program evaluation, clinical and biomedical research, and child health research. The CTSA Program at NIH: Opportunities for Advancing Clinical and Translational Research is the result of investigations into previous program evaluations and assessments, open-session meetings and conference class, and the review of scientific literature. Overall, the committee believes that the CTSA Program is significant to the advancement of clinical and translational research through its contributions. The Program would benefit from a variety of revisions, however, to make it more efficient and effective.
In the United States, approximately 14 million people have had cancer and more than 1.6 million new cases are diagnosed each year. However, more than a decade after the Institute of Medicine (IOM) first studied the quality of cancer care, the barriers to achieving excellent care for all cancer patients remain daunting. Care often is not patient-centered, many patients do not receive palliative care to manage their symptoms and side effects from treatment, and decisions about care often are not based on the latest scientific evidence. The cost of cancer care also is rising faster than many sectors of medicine--having increased to $125 billion in 2010 from $72 billion in 2004--and is projected to reach $173 billion by 2020. Rising costs are making cancer care less affordable for patients and their families and are creating disparities in patients' access to high-quality cancer care. There also are growing shortages of health professionals skilled in providing cancer care, and the number of adults age 65 and older--the group most susceptible to cancer--is expected to double by 2030, contributing to a 45 percent increase in the number of people developing cancer. The current care delivery system is poorly prepared to address the care needs of this population, which are complex due to altered physiology, functional and cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need for social support. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis presents a conceptual framework for improving the quality of cancer care. This study proposes improvements to six interconnected components of care: (1) engaged patients; (2) an adequately staffed, trained, and coordinated workforce; (3) evidence-based care; (4) learning health care information technology (IT); (5) translation of evidence into clinical practice, quality measurement and performance improvement; and (6) accessible and affordable care. This report recommends changes across the board in these areas to improve the quality of care. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis provides information for cancer care teams, patients and their families, researchers, quality metrics developers, and payers, as well as HHS, other federal agencies, and industry to reevaluate their current roles and responsibilities in cancer care and work together to develop a higher quality care delivery system. By working toward this shared goal, the cancer care community can improve the quality of life and outcomes for people facing a cancer diagnosis.
Depression in Parents, Parenting, and Children: Opportunities to Improve Identification, Treatment, and Preventionby Institute of Medicine
Depression is a widespread condition affecting approximately 7.5 million parents in the U.S. each year and may be putting at least 15 million children at risk for adverse health outcomes. Based on evidentiary studies, major depression in either parent can interfere with parenting quality and increase the risk of children developing mental, behavioral and social problems. Depression in Parents, Parenting, and Children highlights disparities in the prevalence, identification, treatment, and prevention of parental depression among different sociodemographic populations. It also outlines strategies for effective intervention and identifies the need for a more interdisciplinary approach that takes biological, psychological, behavioral, interpersonal, and social contexts into consideration. A major challenge to the effective management of parental depression is developing a treatment and prevention strategy that can be introduced within a two-generation framework, conducive for parents and their children. Thus far, both the federal and state response to the problem has been fragmented, poorly funded, and lacking proper oversight. This study examines options for widespread implementation of best practices as well as strategies that can be effective in diverse service settings for diverse populations of children and their families. The delivery of adequate screening and successful detection and treatment of a depressive illness and prevention of its effects on parenting and the health of children is a formidable challenge to modern health care systems. This study offers seven solid recommendations designed to increase awareness about and remove barriers to care for both the depressed adult and prevention of effects in the child. The report will be of particular interest to federal health officers, mental and behavioral health providers in diverse parts of health care delivery systems, health policy staff, state legislators, and the general public.
The National Academies Press (NAP)--publisher for the National Academies--publishes more than 200 books a year offering the most authoritative views, definitive information, and groundbreaking recommendations on a wide range of topics in science, engineering, and health. Our books are unique in that they are authored by the nation's leading experts in every scientific field.
The Children's Health Act mandated the National Children's Study (NCS) in 2000 with one of its purposes being to authorize the National Institute of Child Health and Human Development (NICHD) to study the environmental influences (including physical, chemical, biological, and psychosocial) on children's health and development. The NCS examines all aspects of the environment including air, water, diet, noise, family dynamics, and genetics, on the growth, development, and health of children across the United States, for a period of 21 years. The purpose of NCS is to improve the health and well-being of children and to contribute to understanding the role of these factors on health and disease. The research plan for the NCS was developed from 2005 to 2007 in collaboration among the Interagency Coordinating Committee, the NCS Advisory Committee, the NCS Program Office, Westat, the Vanguard Center principal investigators, and federal scientists. The current design of the study, however, uses a separate pilot to assess quality of scientific output, logistics, and operations and a "Main Study" to examine exposure-outcome relationships. The NCS proposed the use of a multilayered cohort approach for the Main Study, which was one of the topics for discussion at the workshop that is the subject of this publication. In the fall of 2012, NICHD requested that the Committee on National Statistics (CNSTAT) of the NRC and the IOM convene a joint workshop, to be led by CNSTAT. The workshop was to focus on issues related to the overall design (including the framework for implementation) of the NCS. The committee was provided a background paper which it used to select the challenges that were discussed at the workshop. Design of the National Children's Study: A Workshop Summary presents an overview of the workshop held on January 11, 2013. The publication includes summaries of the four sessions of the workshop, a list of participants, and the agenda.
Developing and Strengthening the Global Supply Chain for Second-Line Drugs for Multidrug-Resistant Tuberculosisby Institute of Medicine Forum on Drug Discovery, Development, and Translation Anne B. Claiborne Board on Health Sciences Policy Rebecca A. English Rita S. Guenther Anna Nicholson
To effectively treat patients diagnosed with drug-resistant (DR) tuberculosis (TB) and protect the population from further transmission of this infectious disease, an uninterrupted supply of quality-assured (QA), second-line anti-TB drugs (SLDs) is necessary. Patients diagnosed with multidrug-resistant tuberculosis (MDR TB)--a disease caused by strains of Mycobacterium tuberculosis (M.tb.) resistant to two primary TB drugs (isoniazid and rifampicin)--face lengthy treatment regimens of 2 years or more with daily, directly observed treatment (DOT) with SLDs that are less potent, more toxic, and more expensive than those used to treat drug-susceptible TB. From 2000 to 2009, only 0.2-0.5 percent of the estimated 5 million MDR TB cases globally were treated with drugs of known quality and in programs capable of delivering appropriate care (Keshavjee, 2012). The vast majority of MDR TB patients either died from lack of treatment or contributed to the spread of MDR TB in their communities. A strengthened global supply chain for SLDs could save lives by consistently delivering high quality medicines to more of the people who need them. This public workshop explored innovative solutions to the problem of how to get the right SLDs for MDR TB to people who critically need them. More specifically, the workshop examined current problems and potential opportunities for coordinated international efforts to ensure that a reliable and affordable supply of high-quality SLDs is available. Developing and Strengthening the Global Supply Chain for Second-Line Drugs for Multidrug-Resistant Tuberculosis: Workshop Summary covers the objectives of the workshop, which were to review: -To what extent and in what ways current mechanisms are or are not effectively accomplishing what is needed, including consideration of bottlenecks. -The advantages and disadvantages of centralization in the management of the global drug supply chain, and potential decentralized approaches to improve operations of the supply chain. -What can be learned from case studies and examples from other diseases (e.g., the Affordable Medicines Facility-malaria (AMFm) and the U.S. President's Emergency Plan for AIDS Relief [PEPFAR]) - The current allocation of responsibilities and roles of the private (including industry and nonprofit public health organizations) and public sectors, and examination of opportunities for enhancing and optimizing collaboration -Identification of potential innovative solutions to the problem
The National Academies Press (NAP)--publisher for the National Academies--publishes more than 200 books a year offering the most authoritative views, definitive information, and groundbreaking recommendations on a wide range of topics in science, engineering, and health. Our books are unique in that they are authored by the nation's leading experts in every scientific field.
Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.
Sharing data generated through the conduct of clinical trials offers the promise of placing evidence about the safety and efficacy of therapies and clinical interventions on a firmer basis and enhancing the benefits of clinical trials. Ultimately, such data sharing - if carried out appropriately - could lead to improved clinical care and greater public trust in clinical research and health care. Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities is part of a study of how data from clinical trials might best be shared. This document is designed as a framework for discussion and public comment. This framework is being released to stimulate reactions and comments from stakeholders and the public. The framework summarizes the committee's initial thoughts on guiding principles that underpin responsible sharing of clinical trial data, defines key elements of clinical trial data and data sharing, and describes a selected set of clinical trial data sharing activities.
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