An unbiased index to quantify participant's phenotypic contribution to an open-access cohort.

Sci Rep
Authors
Abstract

The Personal Genome Project (PGP) is an effort to enroll many participants to create an open-access repository of genome, health and trait data for research. However, PGP participants are not enrolled for studying any specific traits and participants choose the phenotypes to disclose. To measure the extent and willingness and to encourage and guide participants to contribute phenotypes, we developed an algorithm to score and rank the phenotypes and participants of the PGP. The scoring algorithm calculates the participation index (P-index) for every participant, where 0 indicates no reported phenotypes and 100 indicate complete phenotype reporting. We calculated the P-index for all 5,015 participants in the PGP and they ranged from 0 to 96.7. We found that participants mainly have either high scores (P-index > 90, 29.5%) or low scores (P-index  10, 57.8%). While, there are significantly more males than female participants (1,793 versus 1,271), females tend to have on average higher P-indexes (P = 0.015). We also reported the P-indexes of participants based on demographics and states like Missouri and Massachusetts have better P-indexes than states like Utah and Minnesota. The P-index can therefore be used as an unbiased way to measure and rank participant's phenotypic contribution towards the PGP.

Year of Publication
2017
Journal
Sci Rep
Volume
7
Pages
46148
Date Published
2017 Apr 07
ISSN
2045-2322
DOI
10.1038/srep46148
PubMed ID
28387241
PubMed Central ID
PMC5384003
Links
Grant list
T32 HG002295 / HG / NHGRI NIH HHS / United States