POLICY BRIEF: Privacy

This is a draft Policy Brief on Data Ethics and Research Integrity produced by the CODATA Data Ethics Working Group. 

We welcome feedback or discussion of the draft briefing via this form: https://forms.gle/SmkhP9XzunRLysGL6 or directly to the authors: Ashlin Lee <Ashlin.Lee@csiro.au>, Masanori Arita <arita@nig.ac.jp> and Steve McEachern <steven.mceachern@anu.edu.au>

Summary

• Privacy is a fundamental human right, and a requirement for individual and community wellbeing.
• However, privacy is also theoretically and practically contested and paradoxical.
• A critical understanding of privacy emphasises the importance of power and harm, and how this might differentially and contextually impact individuals and communities.
• Technological advance brings new categories of data, such as genomes, with which privacy rules need to be re-conceptualised and updated.
• For open science to maintain its values of quality and integrity, and collective benefit, we need to update how we conceptualise privacy, especially in the face of rapid and disruptive technological advancement.

Recommendations

• That open science explicitly adopt a more critical understanding of privacy that recognises underlying dynamics of harm and power that impact individuals and communities
• That the governance frameworks and policies for open science apply this more critical understanding of privacy/power in their deliberation and practice. This includes, but is not limited to:
  • Reconceptualising new data types (e.g. genomes) and their key terminologies (e.g. what is identifiability; what is personal, familial, and communal).
  • Developing governance policies and frameworks that are responsive and agile to privacy risks, harms, and power relationships as technologies advances.
  • Making data controllers and users to follow codes of conduct that are agreed upon by data providers and multidisciplinary stakeholders.
  • Investigating the appropriateness of restorative and reparative approaches where (potential) harms arise.
• That the training and development of open science professionals (such as data stewards) be provided opportunities to upskill in technical, social, legal, and political developments concerning privacy and related topics.