The Making of “Fungible Open Data” in Biomedical Research: Governance, Epistemic Trust, Public Good

Опубликовано 12 мая 2018, 19:28

This talk discusses the epistemic, societal, and ethical implications of making publicly available and reusing open data from biomedical research. Today, making scientific data open is promoted by funding agencies and lawmakers as means to speed up the research process, leverage public investments in large-scale data collections, and increase public trust in science. Especially in genomics research, scientists are increasingly encouraged, and sometimes required, to make their data openly available right after data collection and prior to publication. These policies are challenging well-established community norms, scientific collaborative practices, and epistemic processes for knowledge validation. Moreover, scientists are concerned about the possibility for third parties to exploit their data inappropriately, unethically, or in misleading ways. The main case study is the FaceBase Consortium, a consortium for data sharing operating in the craniofacial research domain. Data types include facial images, metrics for facial norms, gene expression data, and results from genome-wide association studies (GWAS). The reuse of these various “kinds” of data has applications beyond their original context of production that span from the design of mobile apps for facial recognition to the development of forensic DNA phenotypic technologies.

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