“I Agree to Disagree”: Comparative Ethical and Legal Analysis of Big Data and Genomics for Privacy, Consent, and Ownership

Abstract

Statement of Purpose: Digital healthcare, as it relates to big data and genomics, presents a real threat to privacy and ownership rights for individuals and society.Research Question/Hypothesis: Our experience with genomics provides a lens to facilitate the way we navigate toward a future health data space. Contemporary and innovative legal and ethical models can be applied to concepts of privacy, ownership, and consent in relation to big data.Significance: Technological innovation has transformed healthcare at a faster rate than legal reform, security measures, and consent policies can adapt. The Health Information Portability and Accountability Act (HIPAA) has been recognized as a work in progress, with respect to big data as it relates to healthcare and individual wellbeing. The shortcomings of HIPAA, and its application to big data, can be paralleled with its prior limitations surrounding genomics in the last two decades. The Genetic Information and Nondiscrimination Act ( 2008) and Genomic Data Sharing Policy (2015) were established to overcome HIPAA's inadequacies concerning genetic discrimination and security. These policies can serve as a basic model for our approach to legislative reform as it relates to privacy risks with big data generated in healthcare and from healthy individuals in society who are not patients. In addition to notions of privacy, concepts of ownership and consent have become increasingly vague and opaque. The technological advancements have facilitated access and transmission of information, such that big data can be sold for financial gain for commercial enterprise. This applies to genomics, with companies like 23andMe, in addition to big data, as it relates to big tech giants like Apple or Google who oversee wearable and search term data. Clarity of ownership within a digital healthcare arena needs to be defined through ethical and legal frameworks at a global level.Approach: A narrative review of the literature published between 2010 and 2021 was performed using PubMed and Google Scholar. Articles discussing privacy, security, ownership, big data, and genomics were included as relevant literature.Importance: As a society, we are at a crossroads; we must determine the extent of privacy that we are willing to give for science and society. We cannot continue with the current status quo in hope that individual will be used for the greater good of society. We need to strive for a cohesive approach to combat privacy violations by encouraging legislative reform, ethical accountability, and individual responsibility.

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