NIST Workshop on Cybersecurity of Genomic Data

Nichole Holm, ASHG Genetics and Public Policy Fellow

On January 26, 2022, The National Institute of Standards and Technology (NIST) National Cybersecurity Center of Excellence (NCCoE) hosted a virtual workshop on the Cybersecurity of Genomic Data. The event had 593 attendees and 20 presenters, including ASHG 2021 President Gail Jarvik and NHGRI Program Director Heidi Sofia.

The workshop represented a collaboration of experts across industry and government offices, both adjacent to NIST as well as from an international perspective. The workshop addressed the variety of ways in which genetic information is used today, including for DNA/human identification, health diagnostics, personalization of treatment methods, as well as for understanding genetic ancestry and related demographics.

The presenters began by introducing cybersecurity from a genomics perspective, underscoring the necessary balance between data sharing and data security. Among the speakers, a keynote address was given by Michael Orlando of the National Counterintelligence and Security Center, who outlined the counterintelligence landscape surrounding genomic data sharing. In particular, he raised concerns with the potential for genetic information to be used towards the creation of weapons of biological warfare, such as a “precision poison” used to target specific populations.

Presenters further elaborated on the risks and benefits associated with data sharing from academic and individual perspectives, and the work that has been accomplished to improve data sharing capability and security. The limitations of any particular national genomic data and privacy policy was also addressed by Jean-Pierre Hubaux of the Global Alliance for Genomics and Health (GA4GH), who noted the civilian consumer access to internationally available Direct-To Consumer (DTC) genetic tests, in spite of national policies prohibiting non-clinical genetic tests (e.g., France and Switzerland).

ASHG 2021 President Gail Jarvik also presented on the importance of broad data-sharing in conjunction with data privacy protections in order to continue scientific advancement and progress. Dr. Jarvik cited that the “sharing of human genome research data is essential for advancing human genetics and genomics research and medicine, and without this community’s commitment to data-sharing, we would never have completed the Human Genome Project…nor made the remarkably rapid progress we have enjoyed in the two decades since”. She noted that the  ASHG and Research!America public opinion survey indicated that privacy protections are key for study recruitment and participation. Dr. Jarvik also highlighted the importance of collaboration between scientists and national security experts to address any national security concerns arising from human genome research to ensure that new national security measures do not stall biomedical advances.

A complete list of speakers can be found here, and will be updated with the full recording of the event when the video is made available.

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