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Conducting Biosocial Surveys

Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata

; Edited by Robert M Hauser, Maxine Weinstein, Robert Pool, and Barney Cohen.

Washington (DC): National Academies Press (US); .
ISBN-13: 978-0-309-15706-3ISBN-10: 0-309-15706-4

Excerpt

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 trade-offs between the risks and opportunities of expanding access to research data are constantly changing.

This report, which was funded by the National Institute on Aging (NIA), 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.

Contents

This study was supported by Contract No. N01-OD-4-2139 between the National Academy of Sciences and the National Institutes of Health. Support for the work of the Committee on National Statistics is provided by a consortium of federal agencies through a grant from the National Science Foundation (award number SES-0453930).

Suggested citation:

National Research Council. (2010). Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Robert M. Hauser, Maxine Weinstein, Robert Pool, and Barney Cohen, Eds. Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys. Committee on National Statistics and Committee on Population, Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

Any opinions, findings, conclusion, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organization or agencies that provided support for the project.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

Copyright © 2010, National Academy of Sciences.
Bookshelf ID: NBK50732PMID: 21210553
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