Tag Archives: data sharing

Love Data Week 2022: Feb 14-18

Love Data Week is an international celebration of all things data, scheduled annually in the week of Valentine’s day. Its aim is to engage community and increase awareness with events that highlight the prominence, value, and appropriate handling of data in our lives and research.

For Love Data Week 2022, libraries at SFU, UBC, UNBC, and UVic collaborated to offer a series of talks and workshops. All events will be hosted online via Zoom and registration is open to everyone. 

You can check out all of the Love Data Week events and workshops through the UBC Library Research Commons. All events are online and completely open.

This year’s keynote presentation is by Sonia Barbosa, the Manager of Data Curation for Harvard Dataverse. The presentation is titled Lessons learned: 20 years of data acquisition and management services  and will be held on Monday, February 14th from 10am-11am, You can register for this talk here.

Featured thesis: Governing cross-border sharing of genetic data

by Katherina Herman

https://dspace.library.uvic.ca:8443/handle/1828/11545

This Master’s thesis in the School of Public Administration examines the cross-border complexities of genetic data management.

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.

To read more, visit UVicSpace https://dspace.library.uvic.ca:8443/handle/1828/11545

*UVic’s open access repository, UVicspace, makes worldwide knowledge mobilization possible. Through this platform, researchers at any institution have access to dissertations (and theses and graduate projects) published by our graduate students. This also makes works available to the interested layperson, who may be engaged in learning more about the research being done at UVic, with no paywall. UVic’s graduate students are doing valuable research every day – but sometimes it goes unsung. Our goal with this series is to shine a light on our students by featuring excellence, one achievement at a time.

The UVic LIbraries ePublishing Services Team