– Data Donation

Data Donation (Skatova & Goulding, 2019; Blog). Data donation is a concept encapsulating an active decision by an individual to donate their personal data for public good (e.g., population health research).  While data ownership is still a grey area, General Data Protection Regulation (GDPR, introduced in the UK in 2018) allows individuals to exercise “right to portability”. This right allows an individual to request a copy of personal data which is collected on them by an organisation. Individuals can also authorise/consent to a third party (e.g., an academic health researcher) to access their personal data. I work on unpicking motivations and barriers to donate personal data, and study how those can fit with the broader industry and regulatory landscape of personal data sharing.