Genetic data partnerships: Academic publications with privately owned or generated genetic data

PURPOSE: Access to large genetic datasets, many of which are privately owned, is essential to precision medicine and other research protocols. Academic researchers are increasingly capitalizing on this privately-held data. Our goal is to understand these private-academic “genetic data partnerships.” METHODS: We analyzed publications using human genetic data generated or held by major private genetic testing companies that were indexed in PubMed between 2011 and 2017. RESULTS: We found: 1) the number of publications using private genetic data is increasing over time (from 4 in 2011 to 57 in 2017); 2) there are two main models of data-sharing, including researchers using existing private data held by industry (n=172) or researchers sending in new samples for analysis (n=6); 3) 45% of the publications were supported at least in part by the National Institutes of Health; and 4) the type of contributor consent is not disclosed/unclear in the publication almost half (43%) the time. CONCLUSION: Privately held or analyzed genetic databanks offer academic researchers the opportunity to efficiently access large amounts of genetic data. But more transparency should be encouraged, if not required, in order to ensure the proper notification of contributors and to further understand the use of public research funds for private collaborations.