Bodies of Data: Genomic Data and Bioscience Data Sharing

• Published in: Social research Vol. 78; no. 3; pp. 907 - 932
• Main Author: Ossorio, Pilar N.
• Format: Journal Article
• Language: English
• Published: United States New School for Social Research 22.09.2011; Johns Hopkins University Press
• Subjects: Analysis; Biology; Consent; Cooperative research; Data; Data processing; Data sharing; Datasets; Disclosure of information; Electronic data processing; Genetic research; Genetics; Genomes; Genomics; Governance; Human subjects; Identity theft; Information science; Information sharing; Knowledge; Laboratories; Life sciences; Manipulation; Medical research; Part II: Buying and Selling the Body; Personal information; Policy Making; Privacy; Professionals; Quality control; Regulation; Research data sources; Research datasets; Science; Scientists; Self disclosure; Social research; Specimens; Studies; Terminology; United States; United Kingdom > UK; United States > US
• ISSN: 0037-783X; 1944-768X; 1944-768X
• DOI: 10.1353/sor.2011.0029

The biosciences have become information sciences, in which knowledge is often produced in silica, by the manipulation and analysis of large datasets. Genomics has been at the forefront of the data explosion and is a model for bioscience as a large-scale endeavor. Large genome research datasets are frequently shared through research repositories. To protect the interests of people from whom the data were derived (data sources), human data are often shared through a controlled access mechanism, in which data repositories can, in theory, place limitations on who uses the data and for what purpose. Controlled access is an innovative governance mechanism, but it may not protect data sources the way policy makers intended. Here, I describe one controlled access process in some detail, and provide insight into how and why researchers fail to comply with data use restrictions. Adapted from the source document.