Når DNA bliver til DATA: Knivsæggen mellem brug og misbrug af gendata: Et bidrag til samfundsdebatten om Nationalt Genom Center. Hvordan kan udbredelsen af genanalyser potentielt påvirke vores fremtidige samfund?

Sofie Rebecca Høj & Rebekka Rostén Terp

Studenteropgave: Kandidatafhandlinger

Abstrakt

The 29th of May 2018, the majority in Danish Parliament decided to establish National Genome Center (NGC). The overall goal of NGC is to provide better treatment based on genetical insights. These insights are gained through genomic analysis. The main functions of NGC will be to structure the use of genomic analysis in Danish healthcare, making it easier to both conduct analysis, and store genetical data. In July 2019, the first genomic analysis was made in NGC. The center is a comprehensive initiative in the public healthcare sector and it will form in the coming years. Therefore, we are witnessing a debate on how Danish healthcare and society choose to make use of genomic analysis, and we consider this to be an essential discussion to be had right now. We wish to contribute and evolve the public debate which had drawn a lot of media attention due to a number of ethical implications regarding genomic analysis. The main argument is, that by sequencing a person’s genes it is possible to identify potential genetic diseases, and offer unique prevention and treatment, based on insight revealed by the DNA – the so-called personalized medicine. However, a number of actors have expressed some concerns, as they argue that a person’s genetic data is the most personal information one can get access to, and such information prove to be of value in many other areas besides healthcare. Therefore, we wish to explore and answer the research question: How do a number of actors in public media and six selected experts see that the establishment of NGC and an increasing use of genomic analysis can potentially affect Danish society? We seek to do so through two main analysis. First, we examine the kinds of ‘affordances’ the DNA sequencing technology can be said to possess, according to various actors in the media debate. With the concept of affordances, we are able to capture what they think the technology has to offer, and what kinds of actions they think it frames for. The affordance-analysis is based on 50 newspaper articles, and we found that the actors think such technology mainly frames for eight actions. Overall, the first analysis shows that the media debate is somewhat polarized, and divided into a positive and a skeptical view on the use of genetic data. 2 During the second analysis, we examine how experts within the field, imagine how the establishment of NGC can potentially affect Danish society. To do so, we analyze statements from six experts. The analysis is centered around the concept of sociotechnical imaginaries which help us capture their conceptions of a future with NGC established. We found that the experts’ conceptions revolve around four main topics: 1. How NGC will affect the public healthcare sector, 2. the citizens’ role in a future when NGC is established, 3. commercial actors’ interest in DNA-data stored in NGC, and 4. NGC’s broader impact on society. The analysis of the six experts’ sociotechnical imaginaries show some of the same tendencies as the affordance-analysis – that the conceptions are to some degree polarized, in either aspirations and optimism, or skepticism and a wish for more restraint of genomic analysis in future. Our two analysis combined lead us to see a polarized public debate, which indicates that there is a fine line between what can be seen as use and misuse of genetic data. Moreover, we see that the actors in the media debate and the experts’ statements have potential performative effects on how an increasing use of genomic analysis can be implemented and organized within Danish public healthcare. Therefore, it is of significant interest to our research field to know the viewpoints expressed by media actors and experts about the technology. Having the polarization of the public debate in mind, we discuss how media debates about NGC can affect public views on the genome center and the Danes’ trust in their healthcare system. We include an example of a well-known media case, where a large percentage of girls in Denmark stopped receiving the otherwise praised HPV-vaccine. The example shows that trust in public healthcare systems is not an inherent given. Seen in this light, we discuss and bring forward three suggestions for initiatives that NGC and the Danish Ministry of Health can consider, in order to maintain and build trust between Danish citizens and NGC

UddannelserCand.merc.kom Erhvervsøkonomi og Virksomhedskommunikation, (Kandidatuddannelse) Afsluttende afhandling
SprogDansk
Udgivelsesdato2019
Antal sider147
VejledereLise Justesen