"It will be better than before": The Practices of Future Hope in the Constituting of Personalized Medicine
Ben-Gurion University, Israel
The paper focuses on the politics of hope, a less explored dimension in the constituting of futures. Hope is a set of key practices in the construction process of "Personalized Medicine" as a scientific object. This object is an incomplete one, and as such, the practices of hope enable it to become a whole entity by using imaginaries.
Personalized Medicine, is a shared field of medical and scientific innovations. It is in the making, and therefore imaginaries are embodied in it. Imaginaries are future possibilities that are a part of social organization and practices of science and technology. Actors of this field use imaginaries, to fill the missing parts of this scientific object. The imaginaries characterize and shape the scientific objects through a wide range of practices of hope, such as creating a "discourse of hope". This kind of discourse effects policy formulation, resource allocation etc.
The paper will show how imaginaries create practices of hope by using images and promises of medical and scientific innovations or creating promissory communities to protect us from future potential pathology.
The findings are part of my PhD dissertation that is based on qualitative methodology, including semi-structure interviews with professionals in the field of Personalized Medicine, observations in scientific conferences and analysis of scientific and popular papers.
Experiencing The Chronicity of Illness in Switzerland: Women Negotiating The Future of Their Long-Term Conditions
University of Geneva, Switzerland
The chronicity of illnesses affects the lives of people in multiple emotional, material and social ways. As conditions of Modernity – which are partly constituted through current environmental and economic dynamics and ways of life – chronic illnesses and their impairment effects confront contemporary societies with tensions arising from the discrepancies between scientific, therapeutic, socio-economic and individual temporalities.
This contribution is grounded in a project which aimed at understanding the narratives of 52 women living with various long-term illnesses and who reside in Switzerland, as well as of local health care providers. It discusses how these women negotiate experiences of their diagnosed condition(s), and analyzes the strategies they adopt in formal and informal care settings in order to live as close to their aspirations as they can.
The presentation suggests that, by inscribing therapeutic tools, practices and skills in their day-to-day life, these women learn how to deal with the uncertainty of their future health conditions through routinization. Thus the process of getting used to the temporalities of persistent illnesses both takes place in and constitutes the complexity of personal biographies and individual rhythms. The daily making of chronicity is however more than a matter of individual adaptation to an altered life condition. One of the interviewed doctors pointed out, "I do not use the term chronic. It puts my patients in a situation of failure and gives them no will, no hope". His remark reflects the argument put forward in this contribution, namely that the lifelong making of chronicity is intrinsically relational, embedded in therapeutic interactions, tools, spaces and institutions, as well as in daily opportunities for individuals to take part in society.
The Narratives of the Future in Fertility Decision: Theoretical and Empirical Insights from Europe
University of Florence, Italy
In the last years, the period total fertility rates (TFR) declined or levelled off in most Western European countries. While explanations of fertility decisions based on structural constraints may account for several country differences in fertility, important questions remain unanswered. For instance, in 2009, Northern countries resumed their economic growth, but their TFR started to decrease substantially. What are the driving forces of this fertility decline after a Great Recession that, in “hard numbers”, they really never experienced to any relevant extent?
We argue that fertility decisions under structural uncertainty are shaped by narratives of the future cannot be deducted solely from objective indicators. These narratives rely and react both on relevant others’ narratives and on shared narratives of the future, especially coming from the press and the social media, but their influence cannot be predetermined in a single mode.
To investigate the narrative of the futures we propose the use of the framework of the Convinction Narrative Theory together with the DBO action model. Decision-making in fertility is a specific social mechanism where personal narratives of the future create possible worlds by merging together structural elements (labour status, family and labour policies, etc.) and shared narratives (parental, peers and press narratives).
At the EU-FER premises (ERC n. 72596), we employ both an experimental approach and an online survey to assess the different possible futures underpinning fertility decision across five European countries – Italy, Germany, Poland, Norway, and the UK. First results from the comparative research will be presented during the conference.
Imagined Futures Of AI In Healthcare: The Cure For All Diseases?
1London School of Economics and Political Science, United Kingdom; 2University of Oxford, United Kingdom
While entrepreneurs’ promises that Artificial Intelligence (AI) will replace doctors with intelligent machines have attracted immense investments in digital health start-ups, it is poorly understood how those futures of AI are imagined and how they affect contemporary social realities. In the tradition of scholars in science and technology studies who showed how futures are formed in and emerge from specific social and cultural contexts and how future-oriented discourse shaped by values and beliefs can be performative (Jasanoff & Kim 2015), this study uses the UK-based digital health start-up Babylon Health as a case study to explore how entrepreneurs imagine the future of AI in healthcare. Founded in 2013 in London, Babylon has received substantial funding by venture capital investors enabling the company to expand operations quickly. It has also gained political support from the UK Government to provide health services to patients in the UK in partnership with the National Health Service. The AI-based chat-bot at the core of Babylon’s services already gives health advice to over 2 million patients in the UK, Rwanda, Saudi Arabia and China and is imagined to autonomously make diagnosis to enable access to healthcare for everyone, everywhere. This study asks how Babylon and its venture capital investors imagine the future of AI in healthcare in the UK, and how this future is translated from the national to the global scale. The sources of data on which this study draws include preliminary interviews with Babylon’s employees and venture capital investors, multi-sided ethnographic field work at public events attended by Babylon representatives and publicly available documents from the company’s website.