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What specific protections apply to health-related, genetic, or biometric data?


December 5th 2018
data sharing, GDPR, governance, guest post, policy, privacy and security, regulatory and ethics, work streams

In the eyes of the GDPR, not all data are equal. Rather, ‘special categories’ of personal data are given additional protection. For our purposes, there are three special categories of note:

  • ‘genetic data’, defined in Article 4(13)
  • ‘biometric data’ defined in Article 4(14) for the purpose of uniquely identifying a person
  • ‘data concerning health’ defined in Article 4(15).

The boundaries of ‘genetic data’ and ‘data concerning health’ are particularly indistinct. Of two possible interpretations of ‘genetic data’, the latter seems more probable:

  1. that all genetic data that fit the description offered in Article 4(13) are necessarily personal data; or
  2. that ‘genetic data’ means only genetic data that also meet the definition of ‘personal data’ found in Article 4(1).

Similarly, it is uncertain what counts as ‘data concerning health.’ If interpreted along similar lines as the Data Protection Directive and Lindqvist, the concept will be expansive and blurred.

Notwithstanding these definitional questions, the lawful processing of special category datarequires both an Article 6 legal basis and Article 9 derogation. However, some civil law jurisdictions interpret the Article 9 derogations as superseding this requirement to have an Article 6 legal basis. Health, genetic, and biometric data are unique amongst the special categories in allowing Member States to introduce further conditions on their processing.

Data controllers should select a derogation that is compatible with the purpose of their processing and the legal basis they rely upon. Depending on the purpose of processing, clinical and research genomics will usually invoke derogations (g) to (j) of Article 9(2).

To provide UK examples, the GDPR Working Group counsels that NHS organisations utilise the Article 6(1)(e) ‘public interest’ legal basis with the Article 9(2)(h) derogation on ‘preventative or occupational medicine’ or the Article 9(2)(i) derogation on ‘public health.’ Regarding research, the NHS Health Research Authority recommends that the Article 6(1)(e) legal basis be paired with the Article 9(2)(j) derogation on scientific or research purposes.

In certain circumstances, invoking a derogation (e.g. Article 9(2)(j)) frees data controllers from some obligations to their data subjects (Article 89(2)). However, if one relies upon the Article 9(2)(j) research derogation, the rights and freedoms of data subjects must be safeguarded (Article 89(1)). Data controllers must be cognizant of the potential risks to these rights and freedoms (Recital 75) when carrying out data protection impact assessments, especially when processing genetic and health data (Article 35 and Recital 91).

Alison Hall and Johan Ordish work for the PHG Foundation, a think tank with a special focus on genomics and personalised medicine that is a part of the University of Cambridge.

Further Reading

Relevant GDPR Provisions

  • Article 9(1) – prohibition on processing special category data
  • Article 9(2) – prohibition derogations
  • Recital 52 – with suitable safeguards, Member State law may provide for additional derogations
  • Article 9(3) – when invoking the preventative/occupational medicine derogation, processing must be under an obligation of secrecy
  • Recital 53 – health-related purposes processing
  • Recital 54 – interpretation of ‘public health’; safeguarding necessary to process for this purpose; restriction on third party processing
  • Article 9(4) – Member States may introduce further conditions on genetic, biometric data, and data concerning health processing
  • Article 4(13) & Recital 34 – definition of ‘genetic data’
  • Article 4(14) – definition of ‘biometric data’
  • Article 4(15) & Recital 35 – definition of ‘data concerning health’
  • Article 89 – safeguards and derogations relating to processing for scientific and historical research purposes
  • Recital 75 – risks to rights and freedoms of data subjects to consider
  • Article 35 & Recital 91 – data protection impact assessment