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Summary
Pages 1-6

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From page 1...
... 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 second ary analysis -- all of which add cost to a survey and require additional time and attention from the investigators.
From page 2...
... Therefore, the panel recommends that NIA and other relevant funding agencies support at least one central facility for the storage and distribution of biospecimens collected as part of the research they support. The collection of biological specimens along with the traditional social and behavioral data promises a number of benefits that are likely to extend beyond the original research team.
From page 3...
... For these reasons, the panel recommends that both rich genomic data acquired for research and sensitive and potentially identifiable social science data that do not change (or change very little) with time be shared only under restricted circumstances, such as licensing and (actual or virtual)
From page 4...
... In addition, because of the unique risks associated with providing biospecimens, participants in a social science survey that involves the collection of such specimens should be provided with other types of information as well. In particular, they should be given detail on the storage and use of the specimens that relates to those risks and can assist them in determining whether to take part in the study.
From page 5...
... Accordingly, the panel recommends that researchers consider adopting a tiered approach to obtaining consent. Tiers might include participating in the survey, providing specimens for genetic and/or nongenetic analysis in a particular study, and allowing the specimens and data (genetic and/or nongenetic)
From page 6...
... A final issue facing social science researchers who include biospecimens in their surveys is obtaining approval from IRBs. A number of challenges exist, including the fact that few IRBs are familiar with both social and biological science; thus investigators may find themselves trying to justify standard social science protocols to a biologically savvy IRB or explaining standard biological protocols to an IRB that is used to dealing with social science.


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