Governing cross-border sharing of genetic data: a new border frontier

Date

2020-02-12

Authors

Herman, Katherina

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Abstract

The information contained within an individual’s DNA is arguably the most intimate form of information which uncovers a person’s past, present and future. The risk of misuse and discrimination resulting from the inappropriate sharing of genetic data poses serious risks to human rights. Additionally, rapid advances in technology have enabled the digitization and near instantaneous sharing of personal information creating a novel environment for cross-border sharing. In light of the benefits to sharing genetic data and the potential risks, clear and effective frameworks must be in place to enable the safe management of data that preserves the privacy of individuals and enables valuable data sharing between organizations around the world. The primary problem this thesis seeks to explore is the challenge of governing genetic data in a manner that preserves privacy, autonomy and supports appropriate access between organizations, with a particular focus on cross-border data sharing. This thesis was a qualitative study that employed a human rights framework outlined in the United Nations Education Scientific and Cultural Organization (UNESCO) Declarations to conduct a comparative case study analysis on the governance models employed by the European Union (EU), China and a non-for-profit international consortium known as Global Alliance for Genomics and Health (GA4GH). Additionally, a border theory lens was applied to gain a nuanced understanding of how to best manage data in extra-territorial spaces created by technology. The research indicates that governance mechanisms exist in the form of declarations, guidelines and principles established by international non-governmental organizations which provide a human rights framework for the collection, use and disclosure of genetic data. However, the operationalization of such principles within jurisdictions varies with mixed results. While various bodies contribute to the regulation of data sharing, research suggests that the state plays a central role in the governance of genetic data which is achieved primarily through legislation. Genetic data as a case study for border theory suggests that a re-bordering and de-bordering may be occurring simultaneously. Within this approach, states may utilize a territorial approach limiting the sharing of genetic data to the physical boundary lines of the state or they may utilize a functional approach that enables the cross-border flow of genetic data through principled sharing in agreements or legislation. Functional borders may be more conducive to facilitating valuable data sharing for research and health care than territorial borders while still providing privacy protection. These findings may suggest that BC’s context requires a number of considerations and may benefit from a more functional border approach.  

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Keywords

genetic data privacy, cross-border data sharing

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