Implementing Personalized Genetic Medicine: Interprofessional and Patient Perspectives on Connecting Medical Research with Clinical Care

Saxén, Salla; Saxén, Heikki

This qualitative interview study explores the implementation of personalized genetic medicine (PGM) for prostate cancer in a major university hospital in Finland. We interviewed both staff and patients. University hospital staff (n = 12) were interviewed concerning their views about the promises and challenges of the new medicine. The six patient research subjects taking part in a prostate cancer PGM study were interviewed about their experiences. The two sets of interviews were analyzed separately in a qualitative thematic analysis rooted in the theory of social constructionism. The staff interviews brought out the following themes: entanglement of research and care, professionality, context, scientific breakthrough, technocracy, and emotional engagement. In the patient interviews, the following themes were discovered: personal narrative, autonomy, community, and relationships with staff. These results demonstrate that staff and patients both experience entanglement of research and care but they speak about the implementation process using disparate language. Based on the research, we conclude that research design as well as legislative processes would benefit from inclusion of broad perspectives as expressed by those engaged in the experience of research as patients or as practitioners.


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Voices in Bioethics

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Published Here
August 29, 2022


genetic medicine, autonomy, community, inclusion, research ethics, prostate cancer, personal narratives