The debate about the advantages and disadvantages of sharing biomedical research data and healthcare data has been confounded by conflicts of interest that are not always explicit. Data producers (e.g., researchers, healthcare institutions), data consumers (e.g., researchers, analysts), data funders (e.g., federal agencies, foundations) and data disseminators (e.g., editors, libraries) are driven by a variety of interests. While data sharing for genomics and some particular clinical studies has been encouraged or even mandated, sharing of data collected in healthcare processes requires additional considerations, related primarily to human subjects’ consent and potential risk of privacy breaches. I will provide a high-level view of how some of these issues have been addressed, and how some of the above-mentioned groups have developed policies related to data sharing.
Dr. Piwowar is a postdoctoral research associate with DataONE and the Dryad data repository at NESCent, Dr. Piwowar studies the patterns with which scientists share and reuse research datasets, working to inform efficient and effective use of data resources. She has measured the citation benefit of publicly sharing research data, studied patterns in public deposition of datasets, and is currently investigation patterns of data reuse and the impact of journal data sharing policies. Dr. Piwowar has a bachelor's and master's degree from MIT in electrical engineering, 10 years of experience as a software engineer, and a Ph.D. in Biomedical Informatics from the University of Pittsburgh (with advisor Dr. Wendy Chapman). She lives in Vancouver, Canada.
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