Mind the gap! A privacy pro’s thoughts on the data divide

Genomic health research requires extra care in order to avoid poor data quality and unhelpful assumptions. By Abigail Dubiniecki, Privacy Lawyer and Consultant.

Big Data holds immense promise for solving a range of human problems, particularly in the field of health. Unfortunately, lack of diversity in the datasets that fuel research, decision-making and algorithmic design can exacerbate social inequities, hindering our ability to design solutions for all humans while concealing the bigger picture. This is particularly problematic in the field of genomic health research (“genomics”), which aims to unlock the health secrets of human DNA to treat disease and improve health outcomes.

This article examines the data divide in the context of genomics. It raises questions around who benefits, who might be harmed, and who decides what is researched? How do these choices impact the design of algorithms that drive decision-making in precision medicine or diagnostic testing? I examine this issue through a privacy and data justice lens to understand some of the causes and possible solutions, and the role that privacy might play.

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