RT Journal Article
SR Electronic
T1 DNA.Land: A digital biobank using a massive crowdsourcing approach
JF bioRxiv
FD Cold Spring Harbor Laboratory
SP 135715
DO 10.1101/135715
A1 Jie Yuan
A1 Assaf Gordon
A1 Daniel Speyer
A1 Richard Aufrichtig
A1 Dina Zielinski
A1 Joseph Pickrell
A1 Yaniv Erlich
YR 2017
UL http://biorxiv.org/content/early/2017/05/09/135715.abstract
AB 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.