Governing Personalized Health: A Scoping Review

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State: Public
Version: Final published version
License: CC BY 4.0
Serval ID
serval:BIB_C8066CB6440E
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Governing Personalized Health: A Scoping Review
Journal
Frontiers in Genetics
Author(s)
Trein Ph., Wagner J.
Publication state
Published
Issued date
2021
Peer-reviewed
Oui
Volume
12
Pages
650504
Language
english
Abstract
Genetic research is advancing rapidly. One important area for the application of the results from this research is personalized
health. These are treatments and preventive interventions tailored to the genetic profile of specific groups or individuals. The inclusion of personalized health in existing health systems is a challenge for policymakers. In this article, we present the results of a thematic scoping review of the literature dealing with governance and policy of personalized health. Our analysis points to four governance challenges that decisionmakers face against the background of personalized health. First, researchers have highlighted the need to further extend and harmonize existing research infrastructures in order to combine different types of genetic data. Second, decisionmakers face the challenge to create trust in personalized health applications, such as genetic tests. Third, scholars have pointed to the importance of the regulation of data production and sharing to avoid discrimination of disadvantaged groups and to facilitate collaboration. Fourth, researchers have discussed the challenge to integrate personalized health into regulatory-, financing-, and service provision structures of existing health systems. Our findings summarize existing research and help to guide further policymaking and research in the field of personalized health governance.
Keywords
Personalized health, Research infrastructure, Trust, Regulation, Health system, Governance, Policymaking
Open Access
Yes
APC
3177 USD
Funding(s)
Swiss National Science Foundation / Projects / CRSII5_180350
Swiss National Science Foundation / CRAC_5_203801
Create date
17/03/2021 11:26
Last modification date
22/04/2021 7:12
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