excerpt,by the NCBI bookshelf, and available as a free pdf download:
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.
