ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Genetic data partnerships: academic publications with privately owned or generated genetic data.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
5 citing papers in PubMed.
- The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good.The American journal of bioethics : AJOB · 2025Article
- "A Double-Edged Sword": A Brief History of Genomic Data Governance and Genetic Researcher Perspectives on Data Sharing.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2024Article
- "Extremely slow and capricious": A qualitative exploration of genetic researcher priorities in selecting shared data resources.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- "My Research Is Their Business, but I'm Not Their Business": Patient and Clinician Perspectives on Commercialization of Precision Oncology Data.The oncologist · 2020Article
- Differences Between Government, Consortium, and Private Database Stewards Impacting the Genomic Data Market: A Survey of U.S. Academic Genetic Researchers.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
purposeAccess to large genetic data sets, 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."
methodsWe analyzed publications using human genetic data generated or held by major private genetic testing companies that were indexed in PubMed between 2011 and 2017.
resultsWe found that (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.
conclusionPrivately 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, to ensure the proper notification of contributors and to further understand the use of public research funds for private collaborations.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.