Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases

Abstract

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been largely overlooked. In this paper, we propose the outline of a framework for assessing privacy risks in multi-omic research and databases. Following a comparison of privacy risks associated with genomic and epigenomic data, we dissect ten privacy risk-impacting omic data properties that affect either the risk of re-identification of research participants, or the sensitivity of the information potentially conveyed by biological data. We then propose a three-step approach for the assessment of privacy risks in the multi-omic era. Thus, we lay grounds for a data property-based, ‘pan-omic’ approach that moves away from genetic exceptionalism. We conclude by inviting our peers to refine these theoretical foundations, put them to the test in their respective fields, and translate our approach into practical guidance.

Keywords:

• Confidentiality & privacy
• genetic research
• human subjects research
• IRB (Institutional Review Board)
• research ethics

This article is referred to by:

Scrutinizing Privacy in Multi-Omics Research: How to Provide Ethical Grounding for the Identification of Privacy-Relevant Data Properties

Ownership of Genetic Data: Between Universalism and Contextualism?

Whose Data, Whose Risk? Omics Privacy Concerns Should be Defined by Individuals, not Researchers

Is Dupras and Bunnik’s Framework for Assessing Privacy Risks in Multi-Omic Research and Databases Still Too Exceptionalist?

Exceptionalism, Information Categories and the Relevance of Gender

Whose Data Are They Anyway? Identification of Relatives and Genetic Exceptionalism

Data Properties or Analytical Methodologies: Too Much Attention to the Former Ignores Concerns About the Latter

Additional information

Funding

This work was funded by the Canadian Institutes of Health Research and the Nederlandse Organisatie voor Wetenschappelijk Onderzoek.