Download or read book Issues in Returning Individual Results from Genome Research Using Population Based Banked Specimens with a Focus on the National Health and Nutrition Examination Survey written by National Research Council and published by National Academies Press. This book was released on 2014-09-08 with total page 149 pages. Available in PDF, EPUB and Kindle. Book excerpt: Population surveys traditionally collect information from respondents about their circumstances, behaviors, attitudes, and other characteristics. In recent years, many surveys have been collecting not only questionnaire answers, but also biologic specimens such as blood samples, saliva, and buccal swabs, from which a respondent's DNA can be ascertained along with other biomarkers (e.g., the level of a certain protein in the blood). The National Health and Nutrition Examination Survey (NHANES), sponsored by the National Center for Health Statistics (NCHS), has been collecting and storing genetic specimens since 1991, and other surveys, such as the Health and Retirement Study (HRS) funded by the National Institute on Aging, have followed suit. In order to give their informed consent to participate in a survey, respondents need to know the disposition and use of their data. Will their data be used for one research project and then destroyed, or will they be archived for secondary use? Sponsors of repeated cross-sectional surveys, such as NHANES, and of longitudinal surveys that follow panels of individuals over time, such as HRS, generally want to retain data for a wide range of secondary uses, many of which are not explicitly foreseen at the time of data collection. They typically inform respondents that their data will be stored in a secure manner and may be provided to researchers with suitable protections against individual identification. The addition of biologic specimens to a survey adds complications for storing, protecting, and providing access to such data and measurements made from them. There are also questions of whether, when, and for which biologic measurements the results should be reported back to individual respondents. Recently, the cost of full genomic sequencing has plummeted, and research findings are beginning to accumulate that bear up under replication and that potentially have clinical implications for a respondent. For example, knowing that one possesses a certain gene or gene sequence might suggest that one should seek a certain kind of treatment or genetic counseling or inform one's blood relatives. Biomedical research studies, in which participants are asked to donate tissues for genetic studies and are usually told that they will not be contacted with any results, are increasingly confronting the issue of when and which DNA results to return to participants. Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey is the summary of a workshop convened in February 2013 by the Committee on National Statistics in the Division of Behavioral and Social Sciences and Education of the National Research Council. This report considers how population surveys, in particular NHANES, should implement the reporting of results from genomic research using stored specimens and address informed consent for future data collection as well as for the use of banked specimens covered by prior informed consent agreements. The report will be of interest to survey organizations that include or contemplate including the collection of biologic specimens in population surveys for storing for genetic research. The issues involved are important for advancing social, behavioral, and biomedical knowledge while appropriately respecting and protecting individual survey respondents.
Download or read book Issues in Returning Individual Results from Genome Research Using Population Based Banked Specimens with a Focus on the National Health and Nutrition Examination Survey A Workshop Summary written by Kevin Kinsella and published by . This book was released on with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Considerations for Returning Individual Genomic Results from Population Based Surveys Focus on the National Health and Nutrition Examination Survey written by National Academies of Sciences Engineering and Medicine and published by . This book was released on 2024-04-24 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Population surveys collect information from participants by asking questions. Today, many surveys also collect biologic specimens that can be used to analyze a respondents DNA and other biomarkers. The National Health and Nutrition Examination Survey (NHANES) is a population survey that also administers a physical examination, collects biospecimens, and reports some test results (e.g., cholesterol levels) to the participant. While visiting communities large and small throughout the country, NHANES collects health and nutrition data from a representative sample of individuals through in-person interviews and health examinations that take place at special mobile examination centers. The examination component consists of medical, dental, and physiological examinations, as well as laboratory tests. On December 2, 7, and 8, 2022, a workshop was convened to focus on anticipated future collections of genomic data by NHANES. The 2022 workshop explored ethical considerations and current practices for returning genomic information from active research and population surveys. This Proceedings of a Workshop summarizes the presentations and discussions at the workshop.
Download or read book Considerations for Returning Individual Genomic Results from Population Based Surveys Focus on the National Health and Nutrition Examination Survey written by Engineering National Academies of Sciences (and Medicine|Division of Behavioral and Social Sciences and Education|Committee on National Statistics) and published by . This book was released on 2023 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Considerations for Returning Individual Genomic Results from Population Based Surveys written by Celeste Stone and published by . This book was released on 2023 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Cells and Surveys written by National Research Council and published by National Academies Press. This book was released on 2001-01-19 with total page 388 pages. Available in PDF, EPUB and Kindle. Book excerpt: What can social science, and demography in particular, reasonably expect to learn from biological information? There is increasing pressure for multipurpose household surveys to collect biological data along with the more familiar interviewer-respondent information. Given that recent technical developments have made it more feasible to collect biological information in non-clinical settings, those who fund, design, and analyze survey data need to think through the rationale and potential consequences. This is a concern that transcends national boundaries. Cells and Surveys addresses issues such as which biologic/genetic data should be collected in order to be most useful to a range of social scientists and whether amassing biological data has unintended side effects. The book also takes a look at the various ethical and legal concerns that such data collection entails.
Download or read book National Survey Data on Food Consumption Uses and Recommendations written by Coordinating Committee on Evaluation of Food Consumption Surveys and published by National Academies Press. This book was released on 1984-01-01 with total page 141 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book An Aging World written by Kevin G. Kinsella and published by Bureau of Census. This book was released on 2001 with total page 194 pages. Available in PDF, EPUB and Kindle. Book excerpt: Provides statistical information on the worldwide population of people 65 years old or older.
Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Achieving Sustainable Development and Promoting Development Cooperation written by Department of Economic & Social Affairs and published by United Nations Publications. This book was released on 2008 with total page 295 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book presents an overview of the key debates that took place during the Economic and Social Council meetings at the 2007 High-level Segment, at which ECOSOC organized its first biennial Development Cooperation Forum. The discussions also revolved around the theme of the second Annual Ministerial Review, "Implementing the internationally agreed goals and commitments in regard to sustainable development."--P. 4 of cover.
Download or read book Rickettsial Diseases written by Didier Raoult and published by CRC Press. This book was released on 2007-04-26 with total page 400 pages. Available in PDF, EPUB and Kindle. Book excerpt: The only available reference to comprehensively discuss the common and unusual types of rickettsiosis in over twenty years, this book will offer the reader a full review on the bacteriology, transmission, and pathophysiology of these conditions. Written from experts in the field from Europe, USA, Africa, and Asia, specialists analyze specific patho
Download or read book Autism and the Environment written by Institute of Medicine and published by National Academies Press. This book was released on 2008-03-12 with total page 358 pages. Available in PDF, EPUB and Kindle. Book excerpt: Autism spectrum disorders (ASD) constitute a major public health problem, affecting one in every 150 children and their families. Unfortunately, there is little understanding of the causes of ASD, and, despite their broad societal impact, many people believe that the overall research program for autism is incomplete, particularly as it relates to the role of environmental factors. The Institute of Medicine's Forum on Neuroscience and Nervous System Disorders, in response to a request from the U.S. Secretary of Health and Human Services, hosted a workshop called "Autism and the Environment: Challenges and Opportunities for Research." The focus was on improving the understanding of the ways in which environmental factors such as chemicals, infectious agents, or physiological or psychological stress can affect the development of the brain. Autism and the Environment documents the concerted effort which brought together the key public and private stakeholders to discuss potential ways to improve the understanding of the ways that environmental factors may affect ASD. The presentations and discussions from the workshop that are described in this book identify a number of promising directions for research on the possible role of different environmental agents in the etiology of autism.
Download or read book Preventing and Mitigating AIDS in Sub Saharan Africa written by National Research Council and published by National Academies Press. This book was released on 1996-03-28 with total page 369 pages. Available in PDF, EPUB and Kindle. Book excerpt: The AIDS epidemic in Sub-Saharan Africa continues to affect all facets of life throughout the subcontinent. Deaths related to AIDS have driven down the life expectancy rate of residents in Zambia, Kenya, and Uganda with far-reaching implications. This book details the current state of the AIDS epidemic in Africa and what is known about the behaviors that contribute to the transmission of the HIV infection. It lays out what research is needed and what is necessary to design more effective prevention programs.
Download or read book Livestock s Long Shadow written by Henning Steinfeld and published by Food & Agriculture Org.. This book was released on 2006 with total page 418 pages. Available in PDF, EPUB and Kindle. Book excerpt: "The assessment builds on the work of the Livestock, Environment and Development (LEAD) Initiative"--Pref.
Download or read book Continuous Renal Replacement Therapy written by John A. Kellum and published by Oxford University Press. This book was released on 2016 with total page 329 pages. Available in PDF, EPUB and Kindle. Book excerpt: Continuous Renal Replacement Therapy (CRRT) is the standard of care for management of critically ill patients with acute renal failure. Part of the Pittsburgh Critical Care series, Continuous Renal Replacement Therapy provides concise, evidence-based, bedside guidance about this treatment modality, offering quick reference answers to clinicians' questions about treatments and situations encountered in daily practice. Organized into sections on theory, practice, special situations, and organizational issues, this volume provides a complete view of CRRT theory and practice. Tables summarize and highlight key points, and key studies and trials are included in each chapter. The second edition has been updated to include a new chapter on the use of biomarkers to aid in patient selection and timing, extensive revisions on terminology and nomenclature to match current standards, and the most up-to-date information on newly developed CRRT machines.
Download or read book Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer written by National Cancer Policy Forum and published by National Academies Press. This book was released on 2014-05-18 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer is the summary of a workshop convened by the Institute of Medicine's National Cancer Policy Forum in July 2013 to facilitate discussion about gaps and challenges in caring for adolescent and young adult cancer patients and potential strategies and actions to improve the quality of their care. The workshop featured invited presentations from clinicians and other advocates working to improve the care and outcomes for the adolescent and young adult population with cancer. Cancer is the leading disease-related cause of death in adolescents and young adults. Each year nearly 70,000 people between the ages of 15 and 39 are diagnosed with cancer, approximately 8 times more than children under age 15. This population faces a variety of unique short- and long-term health and psychosocial issues, such as difficulty reentering school, the workforce, or the dating scene; problems with infertility; cardiac, pulmonary, or other treatment repercussions; and secondary malignancies. Survivors are also at increased risk for psychiatric conditions such as anxiety, depression, substance abuse, and suicide and may have difficulty acquiring health insurance and paying for needed care. Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer discusses a variety of topics important to adolescent and young adult patients with cancer, including the ways in which cancers affecting this group differ from cancers in other age groups and what that implies about the best treatments for these cancer patients. This report identifies gaps and challenges in providing optimal care to adolescent and young adult patients with cancer and to discuss potential strategies and actions to address them.
Download or read book The Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe written by Nils Hoppe and published by Universitätsverlag Göttingen. This book was released on 2011 with total page 183 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Human tissue and biobank research is of increasing importance for understanding the causes of widespread diseases and developing effective therapies. However, while the success of biobank research depends on the availability of a large number of samples and the consolidation of collections across country borders is very desirable from the perspective of researchers, the legal and ethical requirements for the procurement, storage and use of human tissue samples are rather heterogeneous across different countries. Moreover, the lack of comprehensive supranational regulation on human tissue and biobanking can be seen as posing a serious threat to transnational biomedical research. Against this background, it was one of the aims of the EU-funded Tiss.EU project ('Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union--an Evidence-Based Impact Analysis') to analyse the ethical and legal regulation of human tissue and biobank research across the 27 European Member States plus Switzerland. The results of nine international workshops and three conferences are gathered in this volume. While the country reports evaluate the implementation of ethical and legal guidelines at a national level, point out their strengths and deficits, and, where required, create an evidence base for the revision of said legislation, the conference reports address more general ethical and legal issues in this field. The volume is completed by a final presentation of project's results"--Publisher's description
