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Comment on “Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care.”

European Journal of Human Genetics (2025)Cite this article

The Original Article was published on 23 May 2025

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Sahan et al.’s paper makes a timely and important contribution to determining a role for PPIE in the governance of cancer genomic data use [1]. The authors begin by turning to two public opinion studies (Ipsos and National Data Guardian study (NDG)), about trust in and engagement with genomic data use, to make sound counter points to discussion around, for instance, the concept of “rational ignorance” (the Ipsos study) and why support for an “ad-hoc” PPIE jury model (in the case of the NDG study) is not sufficient for the task of identifying and addressing ethical challenges, for patient and public good.

The authors make a persuasive argument outlining a role for PPIE in genomic data use governance, however there are three aspects of the paper that I found particularly compelling. First, is attention to genomic data aggregation and categorisation. Specifically, in relation to “lived experience of related cancers,” the authors point to moral, clinical and political dynamics of cancer susceptibility genes, which speak to research emphasising the way novel genetic technologies and data use reconfigure identities [2,3,4]. Equally however, genomic data aggregation is a complex and evolving landscape. Whilst the authors underscore the need for a permanent PPIE presence (in governance of genomic data use) to address forms of discrimination and structural inequities associated with novel group formation, their presence could also help better understand links between genomic data aggregation, novel forms of health activism, and genetic citizenship which is often dovetailed by hope [5].

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References

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  1. Florence Nightingale Faculty of Nursing, Midwifery, and Palliative Care, Division for Care for Long Term Conditions, King’s College London, London, UK

    Clara Fabian-Therond

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  1. Clara Fabian-Therond
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Correspondence to Clara Fabian-Therond.

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Fabian-Therond, C. Comment on “Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care.”. Eur J Hum Genet (2025). https://doi.org/10.1038/s41431-025-01908-8

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