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Database shares that transform research subjects into partners

Nature Biotechnology volume 37, pages 1112–1115 (2019)Cite this article

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The promise of participant-reported outcomes for accelerating biomedical research is threatened by these societal concerns around data sharing and fair use. Here we present a new model for research in which participants are issued US Securities and Exchange Commission (SEC)-qualified shares in whatever database holds their data. As shareholders, the participants would be eligible to receive commercial proceeds generated by mining their datasets, effectively transforming them from research subjects to partners. We compare our strategy to other types of strategies and discuss how our proposed framework can provide transparency in data use and facilitate relationships between participants and researchers.

Participant recruitment and longer-term engagement in research studies are key components in building broad and deep genome–phenome digital repositories. However, there are growing concerns among the general public with respect to data abuses. These concerns are fueled by recent revelations regarding questionable practices of large technology companies4, abuse of public genomic databases5, and megadeals between consumer genomics companies and pharmaceutical companies6. The public has become accustomed to the notion that ‘you are the product’ when you are paying below cost or not paying cash up front for products that collect your health or behavioral data. This reality highlights the problems with current big data practices, especially as it applies to the trust that individuals have around the proper use of their data. Practices that reduce personal data to a commodity and that do not benefit the individual who generated it are increasingly problematic, as are approaches in which the gains of data custodians are not shared with the general public7.

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Acknowledgements

We thank the LunaDNA member community for their early adoption of the platform. We are grateful for the participation of all of the LunaPBC advisors in this work.

Author information

Authors and Affiliations

  1. LunaPBC, San Diego, CA, USA

    Robert Kain, Scott Kahn, Debora Thompson, David Lewis & Dawn Barry

  2. Advisor to LunaPBC, San Diego, CA, USA

    David Barker, Carlos Bustamante, Christian Cabou, Alexander Casdin, Francisco Garcia, Jason Paragas, Aristides Patrinos, Aditya Rajagopal, Sharon F. Terry, Ashley Van Zeeland, Ed Yu & Yaniv Erlich

  3. F-Prime Capital, Cambridge, MA, USA

    Carlos Bustamante

  4. CDB Consulting, Redwood City, CA, USA

    Carlos Bustamante

  5. Reneo Capital Management LP, New York, NY, USA

    Alexander Casdin

  6. GSWC Group, Rancho Santa Fe, CA, USA

    Francisco Garcia

  7. ChromaCode, Carlsbad, CA, USA

    Aditya Rajagopal

  8. Genetic Alliance, Washington, DC, USA

    Sharon F. Terry

  9. Illumina, San Diego, CA, USA

    Ashley Van Zeeland

  10. Vascular Cures, Redwood City, CA, USA

    Ed Yu

  11. Department of Computer Science, Fu Foundation School of Engineering, Columbia University, New York, NY, USA

    Yaniv Erlich

Authors
  1. Robert Kain
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  2. Scott Kahn
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  3. Debora Thompson
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  7. Christian Cabou
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  8. Alexander Casdin
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  10. Jason Paragas
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  11. Aristides Patrinos
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  12. Aditya Rajagopal
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  13. Sharon F. Terry
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  14. Ashley Van Zeeland
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  15. Ed Yu
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  16. Yaniv Erlich
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  17. Dawn Barry
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Corresponding authors

Correspondence to Robert Kain or Dawn Barry.

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Competing interests

All authors have a financial interest in LunaPBC, Inc., the management company of the LunaDNA, LLC platform, as employees, advisors or shareholders. Y.E. is also an employee of MyHeritage, a consumer genomics company.

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Kain, R., Kahn, S., Thompson, D. et al. Database shares that transform research subjects into partners. Nat Biotechnol 37, 1112–1115 (2019). https://doi.org/10.1038/s41587-019-0278-9

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