Privacy considerations for sharing genomics data

Authors

  • Marie Oestreich Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Venusberg-Campus 1/99, 53127 Bonn, Germany https://orcid.org/0000-0002-4754-1301
  • Dingfan Chen CISPA Helmholtz Center for Information Security, Saarbrücken, Germany, Stuhlsatzenhaus 5, 66123 Saarbrücken, Germany https://orcid.org/0000-0001-7279-6624
  • Joachim L. Schultze Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Venusberg-Campus 1/99, 53127 Bonn, Germany; Genomics and Immunoregulation, Life & Medical Sciences (LIMES) Institute, University of Bonn, Bonn, Germany, Carl-Troll-Straße 31, 53115 Bonn, Germany; PRECISE Platform for Single Cell Genomics and Epigenomics at Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE) and the University of Bonn, Bonn, Germany, Venusberg-Campus 1/99, 53127 Bonn, Germany https://orcid.org/0000-0003-2812-9853
  • Mario Fritz CISPA Helmholtz Center for Information Security, Saarbrücken, Germany, Stuhlsatzenhaus 5, 66123 Saarbrücken, Germany https://orcid.org/0000-0001-8949-9896
  • Matthias Becker Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Venusberg-Campus 1/99, 53127 Bonn, Germany, Tel. +49 228 43302 642; E-mail: Matthias.Becker@dzne.de https://orcid.org/0000-0002-7120-4508

DOI:

https://doi.org/10.17179/excli2021-4002

Keywords:

data privacy, data sharing, genomic data, transcriptomic data, epigenomic data

Abstract

An increasing amount of attention has been geared towards understanding the privacy risks that arise from sharing genomic data of human origin. Most of these efforts have focused on issues in the context of genomic sequence data, but the popularity of techniques for collecting other types of genome-related data has prompted researchers to investigate privacy concerns in a broader genomic context. In this review, we give an overview of different types of genome-associated data, their individual ways of revealing sensitive information, the motivation to share them as well as established and upcoming methods to minimize information leakage. We further discuss the concise threats that are being posed, who is at risk, and how the risk level compares to potential benefits, all while addressing the topic in the context of modern technology, methodology, and information sharing culture. Additionally, we will discuss the current legal situation regarding the sharing of genomic data in a selection of countries, evaluating the scope of their applicability as well as their limitations. We will finalize this review by evaluating the development that is required in the scientific field in the near future in order to improve and develop privacy-preserving data sharing techniques for the genomic context.

Author Biographies

Marie Oestreich, Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Venusberg-Campus 1/99, 53127 Bonn, Germany

PhD student

Dingfan Chen, CISPA Helmholtz Center for Information Security, Saarbrücken, Germany, Stuhlsatzenhaus 5, 66123 Saarbrücken, Germany

PhD student

Joachim L. Schultze, Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Venusberg-Campus 1/99, 53127 Bonn, Germany; Genomics and Immunoregulation, Life & Medical Sciences (LIMES) Institute, University of Bonn, Bonn, Germany, Carl-Troll-Straße 31, 53115 Bonn, Germany; PRECISE Platform for Single Cell Genomics and Epigenomics at Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE) and the University of Bonn, Bonn, Germany, Venusberg-Campus 1/99, 53127 Bonn, Germany

Professor, Director

Mario Fritz, CISPA Helmholtz Center for Information Security, Saarbrücken, Germany, Stuhlsatzenhaus 5, 66123 Saarbrücken, Germany

Professor, Faculty

Matthias Becker, Systems Medicine, Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Venusberg-Campus 1/99, 53127 Bonn, Germany, Tel. +49 228 43302 642; E-mail: Matthias.Becker@dzne.de

Team Leader

Downloads

Published

2021-07-16

How to Cite

Oestreich, M., Chen, D., Schultze, J. L., Fritz, M., & Becker, M. (2021). Privacy considerations for sharing genomics data. EXCLI Journal, 20, 1243–1260. https://doi.org/10.17179/excli2021-4002

Issue

Vol. 20 (2021)

Section

Review articles

License

Copyright (c) 2021 Marie Oestreich, Dingfan Chen, Joachim L. Schultze, Mario Fritz, Matthias Becker

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