The Janus-Face of Participation
Practices of Evidence in Personalized Medicine
The evolution of molecular biology and genetics in the second half of the 20th century, and in particular the expansion of internet and social media since the beginning of the 21st century have accelerated the vision of an anticipative (i.e., pre-pathogenic) preventive medicine. The success of private providers of genetic testing is evidence of the growing readiness to use genetic information in health-related, preventive and therapeutic decision-making. Connected to this, there seems to be an increasing demand for certainty with regard to individual genetic profiles (Wesselius/Zeegers 2013).
Another consequence of these developments is the participation of laypersons in data-sharing platforms. On the one hand, health-related data are considered the property of the individual, on the other, as part of media discursive practice or for science use (Dove et al. 2012a; Kaye et al. 2013). From this emerge various socio-epistemic configurations, generating heterogeneous health- and disease-related data and documents (practicing evidence). Regardless of whether these data are incorporated as graphics and statistics, or published as narratives of illness, the information contained there influences the direction of individual decision-making (evidencing practice).
Our research hypothesis is that narratives of the experience of illness deliver emphatic evidence, and generate knowledge derived from experience of suffering. The efficacy of such evidence is high when it comes to the individuals concerned since it leads and justifies decision making through empathy, and therefore is a criterion of action: empathic evidence. In the virtual context of data sharing platforms, information is imparted whose quality and content of evidence rely on the innovative interlacing of the methods of molecular genetics, personal experience, and the principle of “data for good”.
The medical-ethical implications of this manner of generating evidence, spread globally via the internet and social media, is the object of this medical historical and philosophical subproject, in which participation is explored as a condition sine qua non for preventive measures, and also as an ambivalent concept in medicine, health policy, and the globalized community of patients. Our basic theses are, firstly, that the demands for individual participation go hand in hand with the claims of anticipation in medicine, and secondly, that personalized medicine – as it has gradually been constituted over the past 75 years – has stimulated the integration of different spheres of activity: science, citizenry, patient groups, private companies, concerned individuals and media. In this process of progressive medicalization of life and multiplication of methods of evidence, the traditional hegemony of medical knowledge is scrutinized.