The funhouse mirror: the I in personalised healthcare

Mira W Vegter,Hub A E Zwart,Alain J Van Gool

doi:10.1186/s40504-020-00108-0

Abstract

Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension of collecting data. We propose the fun-house mirror as a metaphor for the use of personal health data; each health data source yields a particular type of image that can be regarded as a ‘data mirror’ that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided.

Highlights

Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data
The ‘funhouse mirror’ is a metaphor which enables an ethical analysis of the tailoring of self-tracking data, notably by indicating how particular devices may entail a prioritisation if one particular reality over others
A self-tracking device fosters an active relationship to ourselves – which we elaborated as eccentricity – but it may disproportionately reflect particular aspects of the body at the expense of others

Summary

Introduction

Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. An entire economy is evolving dedicated to the use of smart devices for the collection of personal self-tracked data which opens new possibilities for health research. In the context of (self)monitoring practices and endeavors such as the P100 study, a whole range of choices are made by the providers of the self-tracking devices, concerning the ways in which the data are collected.

Results

Conclusion