Public Legitimacy of Personalised Medicine in Denmark

Documenting the development of discourse on personalised medicine in Denmark

Purpose: Applying for data from Netarkivet on Danish websites with content on Personalized Medicine, as well as setting up prospective harvesting of data from web pages of Danish institutions on Personalized Medicine.  

Support Type: Feasibility

Description: This project explores how public legitimacy of Personalized Medicine (PM) is shaped and negotiated.

The introduction of PM in Denmark takes genetics into a new era, where whole sequenced genomes are increasingly used in combination with health data in order to individualize treatment, which is largely dependent on commercial involvement and the broad participation of the public. However, as a recent public debate illustrate, these prerequisites continues to be contested among the Danish public. Thus, the aim of this PhD is to make a thorough and coherent exploration of the public’s experiences, visions and concerns regarding PM in order to embark on how public legitimacy of PM is shaped and negotiated. The following three research questions structures my study of public legitimacy:

  1. How is legitimacy of Personalized Medicine negotiated?
  2. When are the practices of Personalized Medicine experienced as legitimate?
  3. Which factors affect legitimacy of Personalized Medicine?

In the study I will do a mixture of qualitative and quantitative methods. I will use text analysis to study official documents, the public debate and discussion in the parliament. I will do qualitative interviews with health professionals, patients, researchers and policymakers. Finally, I will do a survey. I will further use different digital methods. I am currently harvesting twitter data and I will use material from the archived to follow development of official webpages. I would be interested in studying how the description of Personalized Medicine changes over time and to see how these pages to the changing discourse in the public debate about Personalized Medicine.

Support period: Spring 2019

Project Team:

Lea Skovgaard, Ph.D. student, Section for Health Services Research, University of Copenhagen