NIH Releases New Policy for Data Management and Sharing

Today, nearly twenty years after the publication of the Final NIH Statement on Sharing Research Data in 2003, we have released a Final NIH Policy for Data Management and Sharing. This represents the agency’s continued commitment to share and make broadly available the results of publicly funded biomedical research. We hope it will be a critical step in moving towards a culture change, in which data management and sharing is seen as integral to the conduct of research. Responsible data management and sharing is good for science; it maximizes availability of data to the best and brightest minds, underlies reproducibility, honors the participation of human participants by ensuring their data is both protected and fully utilized, and provides an element of transparency to ensure public trust and accountability. Continue reading

Leveraging Standardized Clinical Data to Advance Discovery

Opportunity knocks for NIH researchers, who will be able to leverage clinical data from electronic health record (EHR) systems with increased frequency and consistency. The recently published final rule, which went into effect on June 30, 2020, and requires electronic health record (EHR) systems to provide the clinical data necessary for nationwide, interoperable health information exchange through the adoption of the U.S. Core Data for Interoperability (USCDI) standard. Continue reading

NIH Needs Your Feedback on a DRAFT NIH Policy for Data Management and Sharing

NIH has released for public comment a Draft NIH Policy for Data Management and Sharing along with supplemental draft guidance. Let the NIH know what you think works and what doesn’t in the proposed policy by submitting your comments through the web-portal no later than January 10, 2020. Continue reading

A Data Sharing Renaissance: Music to My Ears!

When world famous cellist, Yo-Yo Ma, visited the NIH campus, he shared a story from the history of music, in which the peak of stringed instrument quality occurred in the late 17th century at a time of great collaboration and sharing of knowledge. When instrument makers began to compete, all of that changed: secrets of craftsmanship were held close and the quality of instruments plummeted. This decline lasted, according to Ma, until the 20th century, when again the free-flow of knowledge resumed. NIH Director Francis Collins noted, “There’s a lesson here about science.”
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Expanding the Impact of Genomic Data

Genomic research produces incredibly large amounts of valuable data, often more than one lab can feasibly interrogate. Every day, genomic sequencing costs decrease, and high-throughput technologies advance, allowing scientists to generate large-scale genomic data faster than before. Thus the sharing of these data not only is practical and efficient, it also maximizes the scientific potential of valuable data. This is why it’s important for you to know about the release of the final NIH Genomic Data Sharing Policy. Continue reading

NIH and the Lacks Family Announce a HeLa Genome Data Sharing and Use Agreement

In 1951, biomedical research took a leap forward when it was announced that cancer cells taken from a patient, Henrietta Lacks, could not only be grown in a lab, but also grown in perpetuity, creating the first immortal human cell line. This cell line – “HeLa” – is the most widely used human cell line to this day. However, at the time …. Continue reading