What We Do
‘Perspectives on consent’

Understanding Data Practices, Consenting Processes, and Representation in Biobanks: A mixed-methods study with researchers, patients and data scientists

Researchers:
Helen Ward
Roz Redd
Will Viney
Sophie Day

Personalised medicine aims to replace a one-size-fits-all approach with the ‘right treatment for the right person at the right time’. Achieving this requires broad participation of patients willing to share data and biological samples which are then analysed and utilised in the personalisation process. Previous work suggests that certain categories of participant are systematically under-represented in biobanks, resulting in biased data sets. It is possible therefore that “people like you” are not well represented in these biobanks; we are interested in how this affects the practice of personalized medicine, and whether different approaches to consent, sharing and use of data may help to reduce inequity.

Our ‘Perspectives on Consent’ project will inform a critical understanding the consenting processes and data processes at Imperial College Healthcare NHS Trust through a mixed methods case study of the consenting process of the Imperial Knowledge Bank in collaboration with Paul Elliott (IC), Paul Downey (IC) and Ben Glampson (ICHNT). To understand consent requires a clear overview of the context, the system and the processes by which people are approached. The study will focus on all facets of the creation of the biobank as they relate to personalising processes and participation,

including: informatics, data processing, analysis, de-identification, and application in research and clinical settings; the processes of obtaining consent for data collection and use; the mechanisms that produce inequality in representation; the meaning of consent for potential participants and researchers; patient understanding of biobanks, data security and privacy. Finally, the study will also attempt to reduce inequality in representation in the Imperial Knowledge Bank through the design and piloting of randomised controlled trials of modes of consent, for example comparing

electronic with face-to-face offer, and variations in the timing of the offer.

 

This study has approval from the NHS Health Research Authority, ID: 245816

University of Warwick

Personalisation in digital culture

Researchers:
Prof. Celia Lury
Dr Fiona Johnston
Scott Wark

Personalisation is a pervasive part of digital culture. Its applications include tailoring the content we see online to suit our presumed interests; targeting advertising; predicting the trustworthiness of loan applicants; or even shaping the delivery of government programmes. But while it’s clear that personalisation is a widespread phenomenon, what’s less clear is what its pervasiveness means for contemporary culture. We aim to address this question in a variety of ways.

The project’s title uses the phrase ‘People Like You’, which is half of the longer phrase that describes the operation recommendation algorithms as ‘People Like You Like Things Like This’. In the first stage of the project, we will investigate whether and how when you are addressed as ‘you’, you recognise yourself as ‘I’. That is, we ask, who (or when) is the subject of personalisation? To do this, we will: i) conduct interviews with users of Data Selfie, a Chrome browser extension that tracks and collects activity on Facebook.  The interviews will be carried out in Chile and UK; ii) consider the role of names, pronouns, pseudonyms, proxies and anonymity in creating the subjects of personalisation; iii) collect examples of ‘failed’ personalisation, mapping the variety of responses we have when personalisation ‘gets us wrong’.

Second, we will explore the political implications of the fact that the ‘You’ of personalisation is always both singular and plural. This will involve an analysis of the use of hashtags such as ‘Je suis Charlie’ and ‘MeToo’, addressing issues of inclusion and exclusion, oppositional dynamics and the amplifications of differences.

Third, we will investigate the role of machine learning in making classifications (‘People Like You’, as well as ‘Things Like This’). Studying examples such as Artfinder, which matches artworks to buyers by allowing buyers to make a choice by clicking on ‘More like this’, will allow us to explore the implications of these new kinds of classification for questions of cultural value.

Fourth, recognizing that personalisation requires participation, we will describe and investigate genres of participation. To do this we are designing a public competition and personality quiz with design agency Rectangle. This is proving much harder than we thought!

Fifth, we will draw on the practice and criticism of portraiture to reflect on what a person is. We are planning a symposium on art, data and portraiture to be held in Spring 2019 to start this line of inquiry. Then we will move into an analysis of portraiture in digital culture.

For more information see Warwick CIM and data management.

Imperial College London; Goldsmiths, University of London

Personalisation In Breast Cancer Medicine And Healthcare

An Ethnography Of Research And Participation

Duration:
18 months
Researchers:
Professor Helen Ward
Professor Sophie Day
Dr William Viney
Dr Roslyn Redd

Lay summary from application for ethical review (approved)

‘Personalised’ approaches are transforming the treatment of breast cancer and we propose to explore experiences of developments. We will follow up a previous study of the breast cancer pathway (conducted 2013-14 at Imperial College London Healthcare NHS Trust) to learn about changes in the last 5 years. We will also investigate staff and patient perspectives on two translational research studies. And finally, we want to gain an understanding of broader perspectives on personalisation by evaluating participation and public involvement in Science Café meetings and through a Poetry Residency with Di Sherlock at Maggie’s West London, which is associated with the Trust. We will describe developments in personalised medicine and associated ideas about the person and their health, including the role of participation and what people think about the collection, use and sharing of data.

For more information see Imperial College PERC’s current research pages.

Goldsmiths, University of London

What Is Personalisation?

An Interview Study

Duration:
12 months
Researchers:
Prof. Sophie Day
Dr William Viney

Lay summary from application for ethical review (approved)

Despite substantial scholarship on particular forms of personalisation, there are few attempts to establish the broad cultural significance of new practices of personalisation. It is unclear how far these practices are replacing a one-size-fits-all universalism in markets, welfare services, and consumer culture.

We assume that personalisation is a key process in contemporary life, affecting emerging technologies, processes, and imagined futures. This project investigates personalising practices as they are formed in different domains, while paying close attention to the points of interaction and contradiction between them.

Our work at Goldsmiths will establish histories and techniques of personalisation as they affect a variety of individuals working in and beyond the industries for which ‘personalisation’ is an important process – e.g. medicine and data science, public policy, advertising and more. Based on in-depth interviews and focus groups, we will contrast the views of industry practitioners and consumers with historical and theoretical accounts of personalisation.

For more information see Goldsmiths data and governance.