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National Data Opt-Out Statement

Gene42 Inc. o/a PhenoTips

Purpose

The National Data Opt-Out (NDO) is an NHS England policy that allows patients in England to opt out of their confidential patient information (CPI) being used for purposes beyond their individual care and treatment, such as research and planning. This statement sets out PhenoTips’ position on the NDO and explains how the policy applies to the processing of NHS data through the PhenoTips platform.

PhenoTips’ role

PhenoTips is a clinical software platform for the structured collection, analysis and interpretation of phenotypic and genomic data, used in clinical genetics and rare disease diagnostics. When the platform is supplied to a UK NHS customer:

  • The NHS customer is the data controller and is responsible for compliance with the NDO policy in respect of its patients.
  • PhenoTips acts as a data processor, processing personal data only on the documented instructions of the data controller under a written Data Processing Agreement that meets the requirements of Article 28 of the UK GDPR.

Applicability of the NDO to PhenoTips

NHS England guidance confirms that operational application of the NDO is not required where an organisation only processes CPI for an individual’s direct care, and that the NDO does not apply to anonymous or de-identified data (per ISB 1523). On that basis, operational application of the NDO is not required by PhenoTips in its standard processing for the following reasons:

  • Direct individual care. The PhenoTips platform is used to support the direct care of individual patients in clinical genetics and rare disease pathways.
  • Customer de-identification. For research use, PhenoTips Cloud Terms of Use require customers to de-identify data prior to submission unless a specific written agreement provides otherwise. De-identified data is out of scope of the NDO.
  • Processor status. The legal duty to apply the NDO rests with the data controller. PhenoTips does not determine the purposes of processing and does not use customer data for secondary purposes such as research or planning.

Processing under controller instructions

Where a data controller instructs PhenoTips, in writing under the Data Processing Agreement, to process identifiable CPI for a purpose that falls within the scope of the NDO, PhenoTips will act on those documented instructions. In such cases the controller remains responsible for identifying records to which an opt-out applies (for example, by suppressing affected records at source or providing a filtered dataset), and PhenoTips will process only the data supplied or as otherwise instructed in writing by the controller.

PhenoTips does not operate a direct integration with NHS England’s National Data Opt-Out service and does not independently query opt-out status against NHS numbers. PhenoTips also does not provide a patient-facing interface for data subjects to set or manage their NDO preference; that function is provided by NHS England at www.nhs.uk/your-nhs-data-matters.

Supporting controls

The following controls support PhenoTips’ ability to comply with controller instructions in respect of CPI:

  • Role-based access controls restricting access to customer data to appropriately authorised personnel.
  • Data processing responsibilities, including any NDO-related obligations, are confirmed within the platform supply contract and accompanying Data Processing Agreement between the customer and PhenoTips.
  • Customer-specific encryption with keys held in a managed key service, and destruction of customer data and keys upon offboarding.
  • Annual privacy and security training for all staff, including coverage of NHS information governance topics where relevant to role.

Version control

Owner: Pawel Buczkowicz, Co-Founder & COO, Gene42 Inc. o/a PhenoTips
Last reviewed: 29 May 2026
Approved by: Data Protection Officer, WorkNest, dposupport@worknest.com

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