Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata
This report offers findings and recommendations concerning the best approaches in the Biosocial field. The topics covered include: informed consent, privacy issues and the best practice, but also additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data.
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. 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.