Author: National Research Council
Publisher: National Academies Press
ISBN: 0309307074
Category : Social Science
Languages : en
Pages : 149
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Book Description
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.
Author: Kevin Kinsella
Publisher:
ISBN: 9780309307017
Category :
Languages : en
Pages :
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Author: Coordinating Committee on Evaluation of Food Consumption Surveys
Publisher: National Academies Press
ISBN:
Category :
Languages : en
Pages : 141
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Author: Food and Agriculture Organization of the United Nations
Publisher: Food & Agriculture Org.
ISBN: 9251084025
Category : Technology & Engineering
Languages : en
Pages : 304
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Book Description
The publication was prepared based on information provided by 86 countries, outcomes from regional and subregional consultations and commissioned thematic studies. It includes: •an overview of definitions and concepts related to Forest Genetic Resources (FGR) and a review of their value; •a description of the main drivers of changes; •the presentation of key emerging technologies; •an analysis of the current status of FGR conservation, use and related developments; •recommendations addressing the challenges and needs. By the FAO Commission on Genetic Resources for Food and Agriculture.
Author: National Academies of Sciences Engineering and Medicine
Publisher:
ISBN: 9780309704892
Category :
Languages : en
Pages : 0
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Book Description
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.
Author: Nils Hoppe
Publisher: Universitätsverlag Göttingen
ISBN: 3863950313
Category : Medical
Languages : en
Pages : 183
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Book Description
"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
Author: Robert C. Williamson
Publisher:
ISBN: 9780994373878
Category : Biotechnology
Languages : en
Pages : 180
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Book Description
The Future of Precision Medicine in Australia explores the current trends in precision medicine technologies and the role that broader implementation of precision medicine capabilities may play in the Australian context.Recent technological advances allow the determination of a wide range of data about an individual's genetic and biochemical make-up, as formed by their genes, environment and lifestyle. These advances can and do affect the clinical management of a person's health and disease. The ability to analyse disease in terms of an individual's make-up, when compared with and studied alongside aggregated clinical and laboratory data from healthy and diseased populations, is termed 'precision' or 'personalised' medicine. Although medicine has always had personal and predictive aspects, precision medicine allows health and disease to be viewed at an increasingly fine-grained resolution, attuned to the complexities of both the biology of each individual and variation within the population.
Author:
Publisher:
ISBN:
Category : Air
Languages : en
Pages : 276
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Book Description
Author: National Cancer Policy Forum
Publisher: National Academies Press
ISBN: 9780309294416
Category : Medical
Languages : en
Pages : 0
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Book Description
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.
Author: National Library of Medicine (U.S.)
Publisher:
ISBN:
Category :
Languages : en
Pages : 88
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Book Description
