Abstract
Statement of Purpose: There is a real threat to privacy and ownership with digitization of healthcare in relation to big data and genomics.
Research Question/Hypothesis: Our previous experience with genomics can guide the way we analyze the future health data space. Legal and ethical frameworks can be applied to concepts of privacy, ownership, and consent in relation to big data.
Significance: Breakthroughs in technology have transformed healthcare but legal reform and security measures have not advanced similarly. Inadequacies of HIPAA in big data draws parallels with the shortcomings experienced decades ago regarding regulations surrounding genomics. To overcome loopholes surrounding genetic discrimination and security, the Genetic Information and Nondiscrimination Act and the Genomic Data Sharing Policy were established. These legislative reforms can serve as a platform for how we approach privacy risks with big data in healthcare.
Approach: A narrative review of 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: We are at a pivotal moment in society where we must determine the extent of privacy that we are willing to give. We cannot continue with the current status quo for individual health data hoping that it will be used for the greater good. We need a cohesive approach to combat privacy violations by encouraging legislative reform, ethical accountability, and individual responsibility.
