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Genetic data partnerships: academic publications with privately owned or generated genetic data
Kayte Spector-Bagdady1, Amanda Fakih2, Chris Krenz3
1Department of Obstetrics & Gynecology; Research Ethics Service, Center for Bioethics & Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI, USA. kaytesb@med.umich.edu.
Academic researchers increasingly use private genetic data. Greater transparency is needed regarding contributor consent and public funding in these genetic data partnerships.
Area of Science:
- Genomics
- Biotechnology
- Bioinformatics
Background:
- Access to large genetic datasets is crucial for precision medicine and research.
- Privately owned genetic data is increasingly utilized by academic researchers.
- Understanding the dynamics of private-academic genetic data partnerships is essential.
Purpose of the Study:
- To investigate the nature of collaborations between academic researchers and private genetic data holders.
- To analyze the trends and models of genetic data sharing between industry and academia.
Main Methods:
- A systematic analysis of publications citing human genetic data from major private genetic testing companies.
- Data was sourced from PubMed, covering publications between 2011 and 2017.
Main Results:
- Publications using private genetic data grew from 4 (2011) to 57 (2017).
- Two primary data-sharing models were identified: using existing industry data or submitting new samples.
- Contributor consent was unclear in 43% of publications; 45% received National Institutes of Health funding.
Conclusions:
- Private genetic databanks provide efficient access to large-scale genetic information for academic research.
- Increased transparency is recommended for contributor notification and oversight of public research funds in private collaborations.
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