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Data privacy in the age of personal genomics

Nature Biotechnology volume 37, pages 1115–1117 (2019)Cite this article

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An Author Correction to this article was published on 07 October 2019

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To the Editor — The growing adoption of personal genomics has attracted attention to various issues concerning genomic data privacy. For example, some personal genomics companies sell data to pharma companies, a practice that has been found to lack transparency1,2. Rapidly growing genomic databases also have attracted the interest of law enforcement and helped solve criminal cases3. This has drawn criticism due to concerns over government access to genomic data of individuals who have not committed any crimes. To many people, the risk of discrimination is the most concerning issue. In the United States, the Genetic Information Nondiscrimination Act protects individuals from discrimination by employers and health insurance companies. However, it does not apply to life insurance and disability insurance, nor does it protect from discrimination in other areas, such as education and housing. In the future, additional, potentially concerning, uses for genomic data may be developed. For example, personal genomic data might become valuable for targeted advertising.

These concerns might be justified, as risks of privacy infringement and discrimination have already become reality in some parts of the world4. Furthermore, privacy concerns must be addressed because they increasingly deter people from genetic testing and data sharing with researchers5. Here we propose a privacy-focused model for direct-to-consumer (DTC) personal genomics and outline multiple complementary approaches that can be used to secure genomic data (Table 1).

Table 1 Approaches to protecting genomic data privacy
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Fig. 1: Multiparty data access control and record keeping on a blockchain.

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  • 07 October 2019

    An amendment to this paper has been published and can be accessed via a link at the top of the paper.

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Acknowledgements

The authors thank J. Lunshof for critical discussion and feedback on the manuscript.

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Authors and Affiliations

  1. Harvard Medical School, Boston, MA, USA

    Dennis Grishin & George M. Church

  2. Nebula Genomics, Inc., San Francisco, CA, USA

    Dennis Grishin, Kamal Obbad & George M. Church

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  1. Dennis Grishin
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  2. Kamal Obbad
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  3. George M. Church
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Correspondence to Dennis Grishin.

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Competing interests

D.G. and K.O. are employees of Nebula Genomics, Inc., and G.M.C. is a cofounder.

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Grishin, D., Obbad, K. & Church, G.M. Data privacy in the age of personal genomics. Nat Biotechnol 37, 1115–1117 (2019). https://doi.org/10.1038/s41587-019-0271-3

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