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Principle of proportionality in genomic data sharing

Abstract

We propose that a principle of proportionality be applied to genomic data that weighs the depth of data (what is shared) against the breadth of sharing (with whom).

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References

  1. Kaye, J. The tension between data sharing and the protection of privacy in genomics research. Annu. Rev. Genomics Hum. Genet. 13, 415–431 (2012).

    Article  CAS  Google Scholar 

  2. van Schaik, T. A., Kovalevskaya, N. V., Protopapas, E., Wahid, H. & Nielsen, F. G. G. The need to redefine genomic data sharing: a focus on data accessibility. Appl. Transl. Genomics 3, 100–104 (2014).

    Article  Google Scholar 

  3. Gymrek, M., McGuire, A. L., Golan, D., Halperin, E. & Erlich, Y. Identifying personal genomes by surname inference. Science 339, 321–324 (2013).

    Article  CAS  Google Scholar 

  4. Janssens, A. C. & van Duijn, C. M. Genome-based prediction of common diseases: advances and prospects. Hum Mol Genet. 17, R166–R173 (2008).

    Article  CAS  Google Scholar 

  5. Dyer, C. Review recommends duty to share data when in patient's best interests. BMJ 346, f2642 (2013).

    Article  Google Scholar 

  6. Knoppers, B. M. Framework for responsible sharing of genomic and health-related data. HUGO J. 8, 3 (2014).

    Article  Google Scholar 

  7. Wright, C. F. et al. Genetic diagnosis of developmental disorders in the DDD study: a scalable analysis of genome-wide research data. Lancet 385, 1305–1314 (2015).

    Article  Google Scholar 

  8. Bragin, E. et al. DECIPHER: database for the interpretation of phenotype-linked plausibly pathogenic sequence and copy-number variation. Nucleic Acids Res. 42, D993–D1000 (2014).

    Article  CAS  Google Scholar 

  9. Lunshof, J. E., Chadwick, R., Vorhaus, D. B. & Church, G. M. From genetic privacy to open consent. Nat. Rev. Genet. 9, 406–411 (2008).

    Article  CAS  Google Scholar 

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Correspondence to Caroline F. Wright.

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Competing interests

M.E.H. is a consultant for and a shareholder in Congenica Ltd, which provides genetic diagnostic services. The other authors declare no competing interests.

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FURTHER INFORMATION

Deciphering Developmental Disorders (DDD) Study

DECIPHER project

Global Alliance for Genomics and Health

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Wright, C., Hurles, M. & Firth, H. Principle of proportionality in genomic data sharing. Nat Rev Genet 17, 1–2 (2016). https://doi.org/10.1038/nrg.2015.5

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