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Last Posted: Mar 23, 2023
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Data Sharing and the Growth of Medical Knowledge
A Flanagin et al, JAMA, December 5, 2022

In medical research, data sharing facilitates discovery and innovation, transparency, and reproducibility, and, ultimately, trust in science. Impelled by the COVID-19 pandemic, demands for data sharing have accelerated with increasing calls for more rapid dissemination, assessment, combination, and analyses of new medical research results. Contemporary recommendations for data sharing are based on policies developed 4 decades ago. For example, GenBank was established in 1982 as a public access repository of nucleotide sequences. In 1985, the US National Research Council (NRC)3 released a report on data sharing that continues to serve as a useful guide for researchers, authors, editors, and journals. Among the NRC’s recommendations, the following have relevance for scientific journal publication.

Without appropriate metadata, data-sharing mandates are pointless
MA Musen, Nature, September 5, 2022

The motivation behind data-sharing policies is to make data more accessible so others can use them to both verify results and conduct further analyses. But just getting those data sets online will not bring anticipated benefits: few data sets will really be FAIR, because most will be unfindable. What’s needed are policies and infrastructure to organize metadata.

A blockchain-based framework to support pharmacogenetic data sharing
F Albalwy et all, The PGX journal, July 22, 2022

The successful implementation of pharmacogenetics (PGx) into clinical practice requires patient genomic data to be shared between stakeholders in multiple settings. This creates a number of barriers to widespread adoption of PGx, including privacy concerns related to the storage and movement of identifiable genomic data. Informatic solutions that support secure and equitable data access for genomic data are therefore important to PGx. Here we propose a methodology that uses smart contracts implemented on a blockchain-based framework, PGxChain, to address this issue.

Global genomic surveillance strategy for pathogens with pandemic and epidemic potential, 2022–2032
WHO, March 2022

The Strategy provides a high-level unifying framework to leverage existing capacities, address barriers and strengthen the use of genomic surveillance in the detection, monitoring and response to public health threats. Genomic surveillance is part of the broader surveillance and laboratory system, and its implementation should reinforce end-to-end capacities including sample collection, diagnostics, data sharing and analysis. The strategy aims to facilitate the connectivity between different disease control programs and surveillance networks.

Disclaimer: Articles listed in the Public Health Genomics and Precision Health Knowledge Base are selected by the CDC Office of Public Health Genomics to provide current awareness of the literature and news. Inclusion in the update does not necessarily represent the views of the Centers for Disease Control and Prevention nor does it imply endorsement of the article's methods or findings. CDC and DHHS assume no responsibility for the factual accuracy of the items presented. The selection, omission, or content of items does not imply any endorsement or other position taken by CDC or DHHS. Opinion, findings and conclusions expressed by the original authors of items included in the update, or persons quoted therein, are strictly their own and are in no way meant to represent the opinion or views of CDC or DHHS. References to publications, news sources, and non-CDC Websites are provided solely for informational purposes and do not imply endorsement by CDC or DHHS.