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

Abstract

Purpose

Access 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.”

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 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.

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, to ensure the proper notification of contributors and to further understand the use of public research funds for private collaborations.

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Ethics declarations

Data availability

The full list of articles included in this literature review is available from the corresponding author upon request.

Disclosure

The authors declare no conflicts of interest.

Additional information

Publisher’s note: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

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Acknowledgements

This work was funded by the National Center for Advancing Translational Sciences (UL1TR002240) and the National Human Genome Research Institute (K01HG010496).

Author information

Data availability

The full list of articles included in this literature review is available from the corresponding author upon request.

Disclosure

The authors declare no conflicts of interest.

Correspondence to Kayte Spector-Bagdady JD, MBE.

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Keywords

  • genetics
  • precision medicine
  • consent
  • private companies
  • academic researchers
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