The MeInWe project consists of six work packages and an Ethical Laboratory:
Work package 1: The person in flesh and blood
This work package is an ethnographic exploration of the daily practices of personalized medicine across laboratory, clinic, and patient lives within the fields of oncology, cardiology, diabetes & clinical genetics, transplantation medicine, and psychiatry. Following the everyday lives and the work of different stakeholders, this work package traces how personalized medicine is done on the ground, how it consolidates in the Danish health care system and welfare state more broadly, and what practical ethical dilemmas and obstacles arrive with the introduction of a new medical paradigm of ‘personalization’. Central to this investigation are the various actors’ experiences, expectations, hopes, and concerns in relation to personalized medicine.
Key investigators are: Mie Seest Dam, Ivana Bogicevic, Line Hillersdal (oncology), Iben Mundbjerg Gjødsbøl (cardiology), Laura Emdal Navne (diabetes & clinical genetics), Anja Bornø Jensen (transplantation medicine) and Stinne Høgh (psychiatry).
Work package 2: The person as a principle of law
This work package explores the dominant legal and ethical principles surrounding the introduction of personalized medicine. It examines how strategies of personalizing diagnosis, treatment and prevention in Danish health reconfigure boundaries between public, private, national and international research as well as between research and treatment. Drawing on theories of human rights and privacy, the research explores the interplay between the collective’s right to the highest attainable standard of health and the individual patient’s rights. How does the state ensure a regulatory environment that encourages innovation, while respecting patients? The project is centred in law and ethics, and further informed by multidisciplinary perspectives, as well as data generated by the project.
Key investigator is Katharina Ó Cathaoir
Work package 3: The person as data
This work package is a philosophy of science investigation of how data populations are being established and become the ground from which health-related knowledge about the person is created. Proponents of personalized medicine emphasize the need for finer-grained disease classifications and more individualized strategies for disease treatment and prevention. By following developments towards these aims, this work package examines how data-intensive bioinformatics modelling shapes understandings of disease and health. Special attention will be given to the prospects and challenges associated with diagnostics and prognostics based on the integration of multi-omics with health data.
Key investigator is Sara Green
Work package 4: The person as public
This work package is a study of people’s attitudes, trust in, and knowledge about personalized medicine. The work package investigates how the various publics in the welfare state view data collection, data sharing, and commercialization of data as a prerequisite for personalized medicine.
Key investigator: Lea Larsen Skovgaard
Work package 5: The person as politics
This work package is a political science investigation of the politics of personalized medicine in Denmark. Drawing on sciences and technology studies and practice theory, it investigates how the political and organizational agendas related to personalized medicine are formed and come to shape the use of genomic technologies in Danish health care. In addition, the research explores how clinical science and social science travel into these political arenas, undergo various forms of translations and become politically metabolized in public health care. By investigating these processes, the aim is to understand the coming into being of organizational and political frameworks shaping our understanding of "the personal" and “the collective” in personalized medicine.
Key investigator: Lotte Groth Jensen
Work package 6: The person as globalized flows
This work package is an ethnographic study of the flows of data inherent to personalized medicine. Contemporary personalized medicine builds on a growing data ecosystem and a wide range of actors around the globe involved in producing, maintaining and using data. Following the ways data travels from one actor to another, this work package traces how data is made valuable and fit for travel within personalized medicine endeavours. Of particular interest to this investigation is the role of Danish institutions within these globalized flows, exploring what these data exchanges and trades mean for the Danish ‘data culture’, and vice versa.
Key investigator: Clémence Pinel
The Ethical Laboratory
This work package creates an ethical laboratory for searching out ways of integrating personalized medicine into the Danish welfare state in an ethically and a socially responsible way. This ethical laboratory is being set up and inhabited by both MeInWe researchers and practitioners from the fields of personalized medicine as part of the MeInWe project. The fundamental idea of the ethical laboratory is mapping the ethical terrain by exploring conceptual, empirical and normative questions in personalized medicine and through dialogue with stakeholders to investigate boundaries of the self, the human being, the person, the collective and the intersubjective. The ethical laboratory is to be understood within the framework of transparency, solidarity and responsibility.
Key investigator and coordinator of the Ethical Laboratory: Associate Professor Jeanette Knox