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Beyond Our Borders? Public Resistance to Global Genomic Data Sharing
Mary A Majumder1, Robert Cook-Deegan2,3, Amy L McGuire1
1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, United States of America.
Plos Biology
|November 3, 2016
Summary
Public resistance to international genomic data sharing poses a significant barrier to global health initiatives. Addressing privacy concerns and demonstrating the benefits of cross-border data sharing is crucial for scientific progress.
Area of Science:
- Genomics
- Public Health
- Bioethics
Background:
- Global health initiatives aim for worldwide scientific collaboration.
- Existing research focuses on technical obstacles to genomic data sharing.
- Public opinion on international data sharing remains under-explored.
Purpose of the Study:
- To identify public resistance as a barrier to global genomic data sharing.
- To investigate public concerns regarding data sharing across national borders.
- To inform strategies for building public support for international data sharing.
Main Methods:
- Analysis of public opinion polls in the United States.
- Examination of data on international variations in public concerns.
- Review of potential sources of public resistance.
Main Results:
- Public polls reveal significant resistance to international genomic data sharing.
- University researchers in other countries are perceived as least acceptable data users.
- Privacy and security concerns increase with non-US researcher data access.
- Diminished support for cross-border sharing is not exclusive to the US.
Conclusions:
- Public resistance, particularly concerning privacy and security, is a major obstacle to global genomic data sharing.
- Strategies to build public trust are essential for advancing international research collaborations.
- Further in-depth investigation into public concerns is needed to foster support for global data sharing.
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