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Dicing with data: the risks, benefits, tensions and tech of health data in the iToBoS project

  • Aspell, Niamh1
  • Goldsteen, Abigail2
  • Renwick, Robin1
  • 1 Innovation & Research, Trilateral Research Ltd., Waterford , (Ireland)
  • 2 Data Security and Privacy, IBM Research, Haifa , (Israel)
Published Article
Frontiers in Digital Health
Frontiers Media S.A.
Publication Date
Jan 31, 2024
DOI: 10.3389/fdgth.2024.1272709
  • Digital Health
  • Perspective


This paper will discuss the European funded iToBoS project, tasked by the European Commission to develop an AI diagnostic platform for the early detection of skin melanoma. The paper will outline the project, provide an overview of the data being processed, describe the impact assessment processes, and explain the AI privacy risk mitigation methods being deployed. Following this, the paper will offer a brief discussion of some of the more complex aspects: (1) the relatively low population clinical trial study cohort, which poses risks associated with data distinguishability and the masking ability of the applied anonymisation tools, (2) the project's ability to obtain informed consent from the study cohort given the complexity of the technologies, (3) the project's commitment to an open research data strategy and the additional privacy risk mitigations required to protect the multi-modal study data, and (4) the ability of the project to adequately explain the outputs of the algorithmic components to a broad range of stakeholders. The paper will discuss how the complexities have caused tension which are reflective of wider tensions in the health domain. A project level solution includes collaboration with a melanoma patient network, as an avenue for fair and representative qualification of risks and benefits with the patient stakeholder group. However, it is unclear how scalable this process is given the relentless pursuit of innovation within the health domain, accentuated by the continued proliferation of artificial intelligence, open data strategies, and the integration of multi-modal data sets inclusive of genomics.

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