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

• Published in: American journal of bioethics Vol. 21; no. 12; pp. 46 - 64
• Main Authors: Dupras, Charles, Bunnik, Eline M.
• Format: Journal Article
• Language: English
• Published: United States Taylor & Francis 02.12.2021
• Subjects: Confidentiality & privacy; genetic research; human subjects research; IRB (Institutional Review Board); research ethics; IRB (Institutional Review Board); genetic research; Confidentiality & privacy; human subjects research; research ethics
• ISSN: 1526-5161; 1536-0075; 1536-0075
• DOI: 10.1080/15265161.2020.1863516

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.