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DNA.Land: A digital biobank using a massive crowdsourcing approach

Jie Yuan, Assaf Gordon, Daniel Speyer, Richard Aufrichtig, View ORCID ProfileDina Zielinski, Joseph Pickrell, View ORCID ProfileYaniv Erlich
doi: https://doi.org/10.1101/135715
Jie Yuan
1New York Genome Center, New York, NY 10013, USA
2Department of Computer Science, Fu Foundation School of Engineering, Columbia University, New York, NY, USA
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Assaf Gordon
1New York Genome Center, New York, NY 10013, USA
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Daniel Speyer
1New York Genome Center, New York, NY 10013, USA
2Department of Computer Science, Fu Foundation School of Engineering, Columbia University, New York, NY, USA
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Richard Aufrichtig
1New York Genome Center, New York, NY 10013, USA
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Dina Zielinski
1New York Genome Center, New York, NY 10013, USA
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  • ORCID record for Dina Zielinski
Joseph Pickrell
1New York Genome Center, New York, NY 10013, USA
3Center for Computational Biology and Bioinformatics (C2B2), Department of Systems Biology, Columbia University, New York, NY, USA
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Yaniv Erlich
1New York Genome Center, New York, NY 10013, USA
2Department of Computer Science, Fu Foundation School of Engineering, Columbia University, New York, NY, USA
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  • ORCID record for Yaniv Erlich
  • For correspondence: yaniv@cs.columbia.edu
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Abstract

Precision medicine necessitates large scale collections of genomes and phenomes. Despite decreases in the costs of genomic technologies, collecting these types of information at scale is still a daunting task that poses logistical challenges and requires consortium-scale resources. Here, we describe DNA.Land, a digital biobank to collect genome and phenomes with a fraction of the resources of traditional studies at the same scale. Our approach relies on crowd-sourcing data from the rapidly growing number of individuals that have access to their own genomic datasets through Direct-to-Consumer (DTC) companies. To recruit participants, we developed a series of automatic return-of-results features in DNA.Land that increase users’ engagement while stratifying human subject research protection. So far, DNA.Land has collected over 43,000 genomes in 20 months of operation, orders of magnitude higher than previous digital attempts by academic groups. We report lessons learned in running a digital biobank, our technical framework, and our approach regarding ethical, legal, and social implications.

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Posted May 09, 2017.
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DNA.Land: A digital biobank using a massive crowdsourcing approach
Jie Yuan, Assaf Gordon, Daniel Speyer, Richard Aufrichtig, Dina Zielinski, Joseph Pickrell, Yaniv Erlich
bioRxiv 135715; doi: https://doi.org/10.1101/135715
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DNA.Land: A digital biobank using a massive crowdsourcing approach
Jie Yuan, Assaf Gordon, Daniel Speyer, Richard Aufrichtig, Dina Zielinski, Joseph Pickrell, Yaniv Erlich
bioRxiv 135715; doi: https://doi.org/10.1101/135715

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