Expanding Access to Research Data

by National Research Council, Division of Behavioral and Social Sciences and Education, Committee on National Statistics, Panel on Data Access for Research Purposes

2005 · National Academies Press

Policy makers need information about the nationâ€"ranging from trends in the overall economy down to the use by individuals of Medicareâ€"in order to evaluate existing programs and to develop new ones. This information often comes from research based on data about individual people, households, and businesses and other organizations, collected by statistical agencies. The benefit of increasing data accessibility to researchers and analysts is better informed public policy. To realize this benefit, a variety of modes for data accessâ€" including restricted access to confidential data and unrestricted access to appropriately altered public-use dataâ€"must be used. The risk of expanded access to potentially sensitive data is the increased probability of breaching the confidentiality of the data and, in turn, eroding public confidence in the data collection enterprise. Indeed, the statistical system of the United States ultimately depends on the willingness of the public to provide the information on which research data are based. Expanding Access to Research Data issues guidance on how to more fully exploit these tradeoffs. The panel's recommendations focus on needs highlighted by legal, social, and technological changes that have occurred during the last decade.

Reengineering the Survey of Income and Program Participation

by National Research Council, Division of Behavioral and Social Sciences and Education, Committee on National Statistics, Panel on the Census Bureau's Reengineered Survey of Income and Program Participation

2009 · National Academies Press

Beginning in 2006, the Census Bureau embarked on a program to reengineer the Survey of Income and Program Participation (SIPP) to reduce its costs and improve data quality and timeliness. The Bureau also requested the National Academies to consider the advantages and disadvantages of strategies for linking administrative records and survey data, taking account of the accessibility of relevant administrative records, the operational feasibility of linking, the quality and usefulness of the linked data, and the ability to provide access to the linked data while protecting the confidentiality of individual respondents. In response, this volume first examines the history of SIPP and reviews the survey's purpose, value, strengths, and weaknesses. The book examines alternative uses of administrative records in a reengineered SIPP and, finally, considers innovations in SIPP design and data collection, including the proposed use of annual interviews with an event history calendar.

Conducting Biosocial Surveys

by National Research Council, Division of Behavioral and Social Sciences and Education, Committee on Population, Committee on National Statistics, Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys

2010 · National Academies Press

Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.