A call to action to scale up research and clinical genomic data sharing

Zornitza Stark^{1

2

3}, David Glazer⁴, Oliver Hofmann^{5

6

7}, Augusto Rendon⁸, Christian R Marshall⁹, Geoffrey S Ginsburg¹⁰, Chris Lunt¹⁰, Naomi Allen^{11

12}, Mark Effingham¹², Jillian Hastings Ward¹³, Sue L Hill¹⁴, Raghib Ali^{15

16

17}, Peter Goodhand^{18

19}, Angela Page¹⁸, Heidi L Rehm^{18

20

21}, Kathryn N North^{5

6

22}, Richard H Scott^{8

23

24}

Affiliations

¹ Australian Genomics, Melbourne, Victoria, Australia. zornitza.stark@vcgs.org.au.
² Victorian Clinical Genetics Services, Murdoch Children's Research Institute, Melbourne, Victoria, Australia. zornitza.stark@vcgs.org.au.
³ University of Melbourne, Melbourne, Victoria, Australia. zornitza.stark@vcgs.org.au.
⁴ Verily Life Sciences, South San Francisco, CA, USA. dglazer@verily.com.
⁵ Australian Genomics, Melbourne, Victoria, Australia.
⁶ University of Melbourne, Melbourne, Victoria, Australia.
⁷ University of Melbourne Centre for Cancer Research, Melbourne, Victoria, Australia.
⁸ Genomics England, London, UK.
⁹ Division of Genome Diagnostics, Pediatric Laboratory Medicine Department, The Hospital for Sick Children, Toronto, Ontario, Canada.
¹⁰ All of Us Research Program, National Institutes of Health, Bethesda, MD, USA.
¹¹ Nuffield Department of Population Health, University of Oxford, Oxford, UK.
¹² UK Biobank, Stockport, UK.
¹³ Participant Panel, Genomics England, London, UK.
¹⁴ National Health Service England, London, UK.
¹⁵ Our Future Health, Manchester, UK.
¹⁶ Oxford University Hospitals NHS Trust, Oxford, UK.
¹⁷ MRC Epidemiology Unit, University of Cambridge, Cambridge, UK.
¹⁸ Global Alliance for Genomics and Health, Toronto, Ontario, Canada.
¹⁹ Ontario Institute for Cancer Research, Toronto, Ontario, Canada.
²⁰ Program in Medical and Population Genetics, Broad Institute of MIT and Harvard, Cambridge, MA, USA.
²¹ Center for Genomic Medicine, Massachusetts General Hospital, Boston, MA, USA.
²² Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
²³ Great Ormond Street Hospital for Children, London, UK.
²⁴ UCL Great Ormond Street Institute of Child Health, London, UK.

PMID: 39375561
DOI: 10.1038/s41576-024-00776-0

Review

A call to action to scale up research and clinical genomic data sharing

Zornitza Stark et al. Nat Rev Genet. 2025 Feb.

. 2025 Feb;26(2):141-147.

doi: 10.1038/s41576-024-00776-0. Epub 2024 Oct 7.

Authors

Affiliations

¹ Australian Genomics, Melbourne, Victoria, Australia. zornitza.stark@vcgs.org.au.
² Victorian Clinical Genetics Services, Murdoch Children's Research Institute, Melbourne, Victoria, Australia. zornitza.stark@vcgs.org.au.
³ University of Melbourne, Melbourne, Victoria, Australia. zornitza.stark@vcgs.org.au.
⁴ Verily Life Sciences, South San Francisco, CA, USA. dglazer@verily.com.
⁵ Australian Genomics, Melbourne, Victoria, Australia.
⁶ University of Melbourne, Melbourne, Victoria, Australia.
⁷ University of Melbourne Centre for Cancer Research, Melbourne, Victoria, Australia.
⁸ Genomics England, London, UK.
⁹ Division of Genome Diagnostics, Pediatric Laboratory Medicine Department, The Hospital for Sick Children, Toronto, Ontario, Canada.
¹⁰ All of Us Research Program, National Institutes of Health, Bethesda, MD, USA.
¹¹ Nuffield Department of Population Health, University of Oxford, Oxford, UK.
¹² UK Biobank, Stockport, UK.
¹³ Participant Panel, Genomics England, London, UK.
¹⁴ National Health Service England, London, UK.
¹⁵ Our Future Health, Manchester, UK.
¹⁶ Oxford University Hospitals NHS Trust, Oxford, UK.
¹⁷ MRC Epidemiology Unit, University of Cambridge, Cambridge, UK.
¹⁸ Global Alliance for Genomics and Health, Toronto, Ontario, Canada.
¹⁹ Ontario Institute for Cancer Research, Toronto, Ontario, Canada.
²⁰ Program in Medical and Population Genetics, Broad Institute of MIT and Harvard, Cambridge, MA, USA.
²¹ Center for Genomic Medicine, Massachusetts General Hospital, Boston, MA, USA.
²² Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
²³ Great Ormond Street Hospital for Children, London, UK.
²⁴ UCL Great Ormond Street Institute of Child Health, London, UK.

PMID: 39375561
DOI: 10.1038/s41576-024-00776-0

Abstract

Genomic data from millions of individuals have been generated worldwide to drive discovery and clinical impact in precision medicine. Lowering the barriers to using these data collectively is needed to equitably realize the benefits of the diversity and scale of population data. We examine the current landscape of global genomic data sharing, including the evolution of data sharing models from data aggregation through to data visiting, and for certain use cases, cross-cohort analysis using federated approaches across multiple environments. We highlight emerging examples of best practice relating to participant, patient and community engagement; evolution of technical standards, tools and infrastructure; and impact of research and health-care policy. We outline 12 actions we can all take together to scale up efforts to enable safe global data sharing and move beyond projects demonstrating feasibility to routinely cross-analysing research and clinical data sets, optimizing benefit.

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Conflict of interest statement

Competing interests: The authors declare no competing interests.

References

1. Stark, Z. et al. Integrating genomics into healthcare: a global responsibility. Am. J. Hum. Genet. 104, 13–20 (2019). - PubMed - PMC - DOI
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A call to action to scale up research and clinical genomic data sharing

Affiliations

A call to action to scale up research and clinical genomic data sharing

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Miscellaneous