Data Donor Card

  1. Privacy & Re-identification Risks
  • Cross-referencing: Anonymised data could be combined with other datasets to re-identify individuals.
  • Family privacy: Genetic and behavioral data could reveal information about living relatives.
  • Legacy impact: Sensitive personal information could affect family reputation and/or relationships.
  • Location history could reveal others’ patterns (frequent visitors, family members)
  1. Data Misuse & Security
  • Commercial exploitation: Data could be sold or used for purposes beyond research.
  • Security breaches: Stored data could be vulnerable to hacks or unauthorised access.
  • Scope creep: Research purposes might expand beyond original consent.
  • Algorithmic profiling: Data could be used to train systems that perpetuate biases.
  1. Ethical Concerns
  • Power dynamics: Vulnerable populations might feel pressured to donate.
  • Consent boundaries: Difficulty determining ownership of shared communications.
  • Cultural sensitivity: Some data types might be culturally inappropriate to share.
  • Historical context: Past actions/communications could be interpreted without proper context.
  1. Technical Challenges
  • Data integrity: Digital formats may become obsolete or corrupted.
  • Storage costs: Long-term preservation requires sustainable funding and has an enviromental impact.
  • Integration issues: Different data formats/sources may be incompatible.
  • Access control: Balancing researcher access with privacy protections.
  1. Social Impact
  • Digital inequality: System might favor those with extensive digital footprints.
  • Representation bias: Certain demographics might be over/under-represented.
  • Relationship data: Communications involve multiple parties who haven’t consented.
  • Historical revision: Unable to correct/contextualise past data.