What is GDPR?
The
General Data Protection Regulation (GDPR) is a regulation in EU law on data protection and privacy for all individuals within the European Union and the European Economic Area. It also addresses the transfer of personal data outside the EU and EEA areas. The primary aim of the GDPR is to give control to individuals over their personal data and to simplify the regulatory environment for international business by unifying the regulation within the EU.
What Constitutes Personal Data Under GDPR?
Under GDPR,
personal data refers to any information related to an identified or identifiable natural person. This includes data such as names, identification numbers, location data, online identifiers, and factors specific to the physical, physiological, genetic, mental, economic, cultural, or social identity of that person. In epidemiology, personal data could include health records, genetic information, and other sensitive data.
Lawfulness, fairness, and transparency: Data must be processed lawfully, fairly, and transparently.
Purpose limitation: Data should be collected for specified, explicit, and legitimate purposes and not further processed in a manner incompatible with those purposes.
Data minimization: Only data that is necessary for the research purpose should be collected.
Accuracy: Personal data must be accurate and kept up to date.
Storage limitation: Data should be kept in a form that permits identification of data subjects for no longer than necessary.
Integrity and confidentiality: Data must be processed in a manner that ensures appropriate security.
Right to be informed: Individuals have the right to know how their data is being used.
Right of access: Individuals can access their personal data and understand how it is being processed.
Right to rectification: Individuals can have inaccuracies in their personal data corrected.
Right to erasure: Also known as the "right to be forgotten," individuals can request the deletion of their data under certain conditions.
Right to restrict processing: Individuals can request the limitation of their data processing.
Right to data portability: Individuals can obtain and reuse their data for their own purposes across different services.
Right to object: Individuals can object to data processing in certain situations.
Rights related to automated decision-making and profiling: Protections are in place against potentially harmful decisions made without human intervention.
Conclusion
GDPR presents both challenges and opportunities for epidemiological research. While it necessitates rigorous data protection measures, it also fosters greater trust and transparency between researchers and the public. By adhering to GDPR principles and respecting the rights of data subjects, epidemiologists can advance their research while safeguarding the privacy and integrity of the individuals whose data they rely on.