data sharing
House Energy and Commerce Committee Holds Hearing on Data Privacy and Security
On March 1, the House Committee on Energy and Commerce held a hearing on data security, mass data collection, and the need to protect Americans’ privacy in the wake of resulting targeted ads and the vulnerability of consumer data. Salient points regarding the necessity for data security, with implications for researchers and anyone concerned about privacy standards were discussed at length. Witnesses included President and CEO of the Center for Democracy & Technology Alexandra Reeve Givens, Founder and Chief Product Officer of Anonym Graham Mudd, and Counsel and Senior Policy Advisor for Consumer Protection at Kelley Drye & Warren, LLP…
OMB Launches New Public Listening Sessions on Federal Race and Ethnicity Standards Revision
The White House Office of Management and Budget (OMB) announced that it is working to improve race and ethnicity standards across the Federal government by revising their Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity. Specifically, OBM is seeking to understand whether current reporting standards should be changed to address detailed race and ethnic groups, whether formatting changes should be considered, and ways that the guidance for the collection and reporting of race and ethnicity data can be improved. OBM will be scheduling private listening sessions to hear from members of the public beginning on September…
NIH To Hold Two-Part Webinar Series on New Data Management and Sharing Policy
The National Institutes of Health (NIH) will be hosting two interactive webinars on August 11 and September 22. The first event will cover the basics of NIH’s new Data Management and Sharing (DMS) Policy, including data sharing expectations and how to prepare a future DMS plan, which is expected to go into effect on January 25, 2023. The second event will go into more depth on those topics and expand upon privacy protection and data sharing limits. The events will feature the NIH Director of Scientific Data Sharing Policy Division Taunton Paine, the Director of Genomic Data Sharing Policy Implementation…
NSF Awards “America’s Data Hub” Contract
The National Center for Science and Engineering Statistics (NCSES) within the National Science Foundation (NSF) has awarded a contract to establish the America’s Data Hub Consortium, a network intended to “strengthen, support, and advance the NCSES mission by engaging in ground-breaking activities related to data access and sharing, infrastructure, and analysis across the broad landscape of the science and engineering enterprise.” The contract was awarded to Advanced Technology International, a nonprofit R&D collaboration firm. The Consortium’s primary objectives are to “Develop new ways of acquiring and linking data to yield valuable insights into critical issues Support cutting-edge data infrastructure Build…
NIH Releases Final Policy for Data Management and Sharing
On October 29, the National Institutes of Health (NIH) released its final agency policy for data management and sharing (DMS) of scientific data generated from NIH-funded or conducted research. The NIH’s DMS policy takes stakeholder feedback into account to ensure that data from scientific research is accessible, sharable, and managed properly. More information about the policy is available on the NIH website. Back to this issue’s table of contents.
OSTP Requests Feedback on Data Repositories and Data Sharing
The While House Office of Science and Technology Policy (OSTP) issued a Request for Public Comment on January 17 on Draft Desirable Characteristics of Repositories for Managing and Sharing Data Resulting from Federally Funded Research. The request, published in the Federal Register, was issued on behalf of the multi-agency Subcommittee on Open Science of the National Science and Technology Council’s Committee on Science. The proposed set of desirable characteristics are intended to improve the consistency of information that federal agencies provide to the scientific community about the long-term preservation of data resulting from federally funded research. The Subcommittee on Open…
NIH Requesting Comments on Newly Released Draft Policy for Data Management and Sharing
On November 6, the National Institutes of Health (NIH) released a draft of the new NIH Policy on Data Management and Sharing. The policy is intended to clarify rules on the handling and sharing of potentially sensitive NIH data while allowing access to the data to be more available for use in research. The draft policy requires all NIH-funded research resulting in the generation of scientific data to be submitted alongside a Data Management and Sharing Plan outlining any potential restrictions or limitations of data management. NIH is accepting public comments on the draft policy until January 10, 2020. More…
NIA Issues RFIs for Alzheimer’s Disease Bypass Budget and on Enhancing Timely Sharing of Data
The National Institute on Aging (NIA) of the National Institutes of Health (NIH) has issued two requests for information (RFI). The first is a time-sensitive RFI, Planning for NIA’s FY 2019 Alzheimer’s Disease Bypass Budget (NOT-AG-17-005). The Institute is seeking comments and input for the Institute’s use in the Fiscal Year (FY) 2019 NIH Alzheimer’s Disease Bypass Budget (ADBB), particularly in identifying and establishing research priorities for the FY 2019 ADBB. The ADBB is congressionally mandated via the FY 2015 Consolidated and Furthering Continuing Appropriations Act. NIH is further mandated to update the ADBB annually through FY 2025. In addition…
National Institute on Aging Seeks Input on Timely Data Sharing
The National Institute on Aging (NIA) of the National Institutes of Health (NIH) is seeking input from the scientific community on “ways to enhance the timely sharing of high-quality data generated by NIA-funded studies.” Accordingly, the Institute has issued a request for information (RFI) (NOT-AG-17-001) regarding “unique considerations” that might exist for this research as well as what the extramural research community believes are “the primary characteristics of successful data-sharing resources and strategies.” The information received by the institute will be used to inform its future policy development. Comments are due April 15, 2017. For more information and/or to comment…
NIH Issues Final Genomic Data Sharing Policy
The National Institutes of Health (NIH) recently issued its final NIH Genomic Data Sharing (GDS) policy designed to promote data sharing as a way to accelerate the translation of data into knowledge, products, and procedures that improve health but also protect the privacy of research participants.