The 2005 conference, "The Genomic Revolution: Implications for Treatment and Control of Infectious Disease," attracted scientists, engineers, and medical researchers to work on new interdisciplinary responses using genomics to treat and control infectious diseases. Eleven conference working groups gave the participants eight hours to develop new research approaches to problems in infectious disease using genomics. Among the challenges were designing a new device to detect viral and bacterial pathogens; how best to use $100 million to prevent a future pandemic flu outbreak; how to improve rapid response to an outbreak of disease and reduce the cost of diagnostic tests; and how to sequence an individual's genome for under $1,000. Representatives from public and private funding organizations, government, industry, and the science media also participated in the working groups. This book provides a summary of the conference working groups. For more information about the conference, visit www.keckfutures.org/genomics. The National Academies Keck Futures Initiative was launched in 2003 to stimulate new modes of scientific inquiry and break down the conceptual and institutional barriers to interdisciplinary research. The National Academies and the W.M. Keck Foundation believe considerable scientific progress and social benefit will be achieved by providing a counterbalance to the tendency to isolate research within academic fields. The Futures Initiative is designed to enable researchers from different disciplines to focus on new questions upon which they can base entirely new research, and to encourage better communication between scientists as well as between the scientific community and the public. Funded by a $40 million grant from the W.M. Keck Foundation, the National Academies Keck Futures Initiative is a 15-year effort to catalyze interdisciplinary inquiry and to enhance communication among researchers, funding agencies, universities, and the general public with the object of stimulating interdisciplinary research at the most exciting frontiers. The Futures Initiative builds on three pillars of vital and sustained research: interdisciplinary encounters that counterbalance specialization and isolation; the identification and exploration of new research topics; and communication that bridges languages, cultures, habits of thought, and institutions. Toward these goals, the National Academies Keck Futures Initiative incorporates three core activities each year: Futures conferences, Futures grants, and National Academies Communication Awards.
This publication represents the culmination of the National Academies Keck Futures Initiative (NAKFI), a program of the National Academy of Sciences, the National Academy of Engineering, and the National Academy of Medicine supported by a 15-year, $40 million grant from the W. M. Keck Foundation to advance the future of science through interdisciplinary research. From 2003 to 2017, more than 2,000 researchers and other professionals across disciplines and sectors attended an annual "think-tank" style conference to contemplate real-world challenges. Seed grants awarded to conference participants enabled further pursuit of bold, new research and ideas generated at the conference.
The 2005 conference, "The Genomic Revolution: Implications for Treatment and Control of Infectious Disease," attracted scientists, engineers, and medical researchers to work on new interdisciplinary responses using genomics to treat and control infectious diseases. Eleven conference working groups gave the participants eight hours to develop new research approaches to problems in infectious disease using genomics. Among the challenges were designing a new device to detect viral and bacterial pathogens; how best to use $100 million to prevent a future pandemic flu outbreak; how to improve rapid response to an outbreak of disease and reduce the cost of diagnostic tests; and how to sequence an individual's genome for under $1,000. Representatives from public and private funding organizations, government, industry, and the science media also participated in the working groups. This book provides a summary of the conference working groups. For more information about the conference, visit www.keckfutures.org/genomics. The National Academies Keck Futures Initiative was launched in 2003 to stimulate new modes of scientific inquiry and break down the conceptual and institutional barriers to interdisciplinary research. The National Academies and the W.M. Keck Foundation believe considerable scientific progress and social benefit will be achieved by providing a counterbalance to the tendency to isolate research within academic fields. The Futures Initiative is designed to enable researchers from different disciplines to focus on new questions upon which they can base entirely new research, and to encourage better communication between scientists as well as between the scientific community and the public. Funded by a $40 million grant from the W.M. Keck Foundation, the National Academies Keck Futures Initiative is a 15-year effort to catalyze interdisciplinary inquiry and to enhance communication among researchers, funding agencies, universities, and the general public with the object of stimulating interdisciplinary research at the most exciting frontiers. The Futures Initiative builds on three pillars of vital and sustained research: interdisciplinary encounters that counterbalance specialization and isolation; the identification and exploration of new research topics; and communication that bridges languages, cultures, habits of thought, and institutions. Toward these goals, the National Academies Keck Futures Initiative incorporates three core activities each year: Futures conferences, Futures grants, and National Academies Communication Awards.
Collective Behavior is the summary of the 2014 National Academies Keck Futures Initiative Conference on Collective Behavior. Participants were divided into fourteen interdisciplinary research teams. The teams spent nine hours over two days exploring diverse challenges at the interface of science, engineering, and medicine. The composition of the teams was intentionally diverse, to encourage the generation of new approaches by combining a range of different types of contributions. The teams included researchers from science, engineering, and medicine, as well as representatives from private and public funding agencies, universities, businesses, journals, and the science media. Researchers represented a wide range of experience - from postdoc to those well established in their careers - from a variety of disciplines that included science and engineering, medicine, physics, biology, economics, and behavioral science. The teams needed to address the challenge of communicating and working together from a diversity of expertise and perspectives as they attempted to solve a complicated, interdisciplinary problem in a relatively short time. This report highlights the presentations of the event and includes the team reports and pre-meeting materials.
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.
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