Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care - Article

Sep 23, 2026

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Comprehensive cancer data collections, including genomic data, are needed to improve risk prediction and treatments, yet ethically sound Patient and Public Involvement and Engagement (PPIE) is required for trustworthy use. This paper determines a justified role for PPIE in governing genomic data in cancer care. It analyzes public attitudes toward PPIE in genomics governance, characterizes two ethically significant context features, and integrates them into a context-tailored governance approach that supports success.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages6

Reading Time15 min

AccessFree to download

Introduction

Why focus on public support for cancer genomics?

Determining an appropriate PPIE role

[www.nature.com/ejhg](www.nature.com/ejhg) ARTICLE OPEN Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care Katherine Sahan 1 ✉ , Lesley Turner2, Nina Hallowell 1, Michael Parker 1,6 and Anneke Lucassen 3,4,5,6 © The Author(s) 2025 | | | | | --- | --- | --- | | | Comprehensive collections of cancer data, including genomic data, are needed to improve cancer risk prediction and treatments. A recent government review, Better, Broader, Safer: Using health data for research and analysis, has argued for high-quality Patient and Public Involvement and Engagement (PPIE) for ethical data use. In this paper we determine a role and justiﬁcation for PPIE to govern uses of genomic data in ﬁelds like cancer. First, we analyse two public attitudes studies about the role of PPIE in genomics governance. Second, we characterise two ethically-signiﬁcant features of the context of governing genomic data: 1) data aggregation leading to novel group formation, and 2) the hybrid territory of genomic cancer data uses. Thirdly, we bring together these aspects to describe a fully determined role for PPIE within an approach to governing cancer genomic data, which is tailored to major areas of ethical consideration. Our account is a novel interpretation of what PPIE is for in governance, how it may foster | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | public support and how its success in so doing depends on it being tailored to context. | | | | | European Journal of Human Genetics (2026) 34:1081–1086; [https://doi.org/10.1038/s41431-025-01866-1](https://doi.org/10.1038/s41431-025-01866-1) | | | | | | INTRODUCTION Approximately 1 in every 2 people in the UK will develop cancer in their lifetime [1] . Comprehensive collections of data about cancer patients enable understanding of the causes, prevention and treatment of cancer. These increasingly include—or link to—genomic data [2, 3] . As well as research, collections may be used for evaluating clinical performance, audit, and education [4] . Genomic data within collections can greatly assist understanding of cancer predisposition, progression and outcomes [5] . Using this data ethically is important for continued public trust and support. Patient and Public Involvement and Engagement (PPIE) is increasingly part of discussions about public trust and data ethics1. For example, Goldacre and Morley’s recent review of using health data for research and analysis has recommended high-quality PPIE for achieving ‘productive and ethical’ data use [6] . Others have 1Deﬁnitions and practices of Patient and Public Involvement and Engagement (PPIE) are highly variable and are accompanied by a rich history of patient advocacy and activism. For the purposes of this paper, we use the description of PPIE in reference [6] as a working deﬁnition: ‘The most useful, successful, and impactful health data research projects are often those that: design projects with, and for, patients and the public from the outset; involve a diverse range of representatives in every decision, from data deﬁnitions, to interpretation and dissemination; listen to (and act on) the advice, feedback, and input of patient representatives; and treat their values, beliefs and experiences as crucial to success…’ (6, p145) . For more information about the origins and history of PPIE in England see [7], in Europe see [8], in the US see [9] . associated PPIE with what will secure public interests, trust or support [6, 10–16] . Still others have emphasized an important role for PPIE within research governance [17, 18], saying that ‘ [p]ublic involvement in research governance can help research be more transparent and gain public trust.’ [18] . However, it is important to determine how precisely PPIE might function justiﬁably in particular governance contexts. In this paper, we seek to determine a role for PPIE in the

FAQs

Why does the paper emphasize PPIE in genomic data governance for cancer care?

Ethical use of genomic data is presented as essential for maintaining public trust and support. The paper argues that high-quality PPIE enables productive and ethical data use.

What evidence does the paper use to develop its role for PPIE?

It analyzes two public attitudes studies about PPIE’s role in genomics governance. It also examines two ethically significant contextual features related to governing genomic data.

What are the two ethically significant contextual features discussed?

The paper describes (1) data aggregation that leads to novel group formation, and (2) the hybrid territory of genomic cancer data uses.

Sep 23, 2026

Uploaded by moss~