Since Walter Lippmann’s famous denunciation of The Public as a phantom figure in 1927, references to ‘public opinion’ have given rise to questions about who can represent what to whom. Today, more than 90 years later, these questions continue to be relevant, and ongoing datafication of health has added further dimensions. The datafication itself construes particular publics and silences others but researchers continue to rely on these measures of datafication to study populations as well as to create room for action. Here I present some reflections on how I engage with this challenge in a new study of public legitimacy of Personalised Medicine in Denmark.
Denmark has one of the most digitalised healthcare systems in the world with many extensive registers following citizens from cradle to grave. Data are used to facilitate treatment across sectors, for administrative purposes and to conduct health research. Each Dane is ascribed a unique identity number used in all encounters with public (and many private) services. Information is routinely gathered in registers, making epidemiologists consider the whole population as one big ‘cohort study’. Danes do not have the possibility to opt out of research done on registers, except from research done on tissue - a possibility that, until recently, was fairly unknown and hardly used. Policymakers typically say, “The public doesn’t mind, they trust in the Danish system”. Yet, with the Danish introduction of Personalised Medicine, a data-intensive form of medicine necessitating the building of a data warehouse storing genetic and other health data, a public debate has evolved. The notion of one unanimous trusting public was severely challenged even among policymakers. If the public is not unanimous and trusting in relation to Personalised Medicine how do they then perceive this new technology?
I decided to embark on this question and began to study how different segments of the Danish population perceive the use of health and genetic data for Personalised Medicine. I wanted to explore the hopes and fears of different groups affected by the new forms of data sourcing and exchange. Instead of talking on behalf of the public, I wondered how diverse groups could be helped to articulate their own agendas. My hope is that such insights can contribute with knowledge about how a future with Personalised Medicine should look like, if it is to meet the wishes and interest of Danish citizens. How can we mobilize different publics and explore opinions of people affected differently by Personalised Medicine?
My starting point is that publics do not exist; they are constructed. Personalised Medicine is itself an initiative that bundles data in ways that create particular publics, and responses to this initiative generate other publics by building on or challenging existing information infrastructures. In the media debate, several publics with conflicting agendas surfaced, and the tracking of opinions through surveys and civic participation comprised yet new forms of publics.
As criticism evolved, many argued that informed consent had to be given before genetic data could be stored. As a compromise, health professionals are now required to inform about the possibility to opt out of one’s tissue being used for research. With the new focus on opt out more people will probably do so. However, an opt-out register creates new forms of datafying a public. This also leaves researchers with a broken population instead of one big ‘cohort study’, which not only have implications for research in Personalised Medicine but also research done on tissue more broadly. Opt out is further used as a way to trace public opinion, an opt out however tells us little about actual opinions.
Through the Danish Genome Project another fragmented public became apparent, the genetic public. A part of the project was to produce a Danish Reference Genome, representing the average Danish citizen. The people used to create the Danish Reference Genome where fifteen healthy families, consisting of mother, father and child (for more information see http://www.genomedenmark.dk/). Though the webpage specifies that the criteria for inclusion was solely scientific, the people represented are only white people, who have been Danish for ‘generations’ living in a heteronormative family structure. As a result, what it means to be Danish in the project (and member of the Danish genetic public) is defined very narrowly.
These are just some examples of how publics are created through practices relating to Personalised Medicine and digitalisation. My point is that we as researchers have to acknowledge the diverse ways of making publics in data-intensive medicine and that our own interventions construct publics in similar ways. In my study of legitimacy of Personalised Medicine, I thus try to knowingly construct my publics. I currently work with the making of three publics: (1) the writing publics, (2) the implementing publics, and (3) the silent publics. I choose to use the plural form to stress that I do not see any of these groups as homogeneous. The writing publics denote groups of people we can trace through written documents about Personalised Medicine, including the data from media debates, policy papers, discussions in the parliament and social media posts. The implementing publics are those who, through their daily practices enable and engage with Personalized Medicine. That is patients, healthcare professionals, researchers and policymakers who actively work with Personalised Medicine. Then there is the rest: All those who do not participate in the debate, who do not actively implement Personalised Medicine, but who nevertheless are going to contribute to research with their health data or who might come to receive Personalised Medicine in the future. I call them the silent publics.
Throughout this blog post, I have tried to show that when we become aware of the diversity of publics created through digitalised representation, we become more aware of the people who are not represented. My hope is that such a focus will enable us to start paying attention to the silenced voices and as a result become better at building solutions that take their interests into account.