Trein Philipp, Wagner Joël
Department of Political Science and International Relations, University of Geneva, Geneva, Switzerland.
Department of Actuarial Science, Faculty of Business and Economics (HEC Lausanne), University of Lausanne, Lausanne, Switzerland.
Front Genet. 2021 Apr 21;12:650504. doi: 10.3389/fgene.2021.650504. eCollection 2021.
Genetic research is advancing rapidly. One important area for the application of the results from this work 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.
基因研究正在迅速发展。这项工作成果应用的一个重要领域是个性化医疗。这些是针对特定群体或个体的基因特征量身定制的治疗方法和预防性干预措施。将个性化医疗纳入现有医疗体系对政策制定者来说是一项挑战。在本文中，我们展示了对有关个性化医疗治理与政策的文献进行主题范围综述的结果。我们的分析指出了决策者在个性化医疗背景下面临的四个治理挑战。第一，研究人员强调需要进一步扩展和协调现有的研究基础设施，以便整合不同类型的基因数据。第二，决策者面临着在个性化医疗应用（如基因检测）中建立信任的挑战。第三，学者们指出了规范数据生产和共享的重要性，以避免对弱势群体的歧视并促进合作。第四，研究人员讨论了将个性化医疗纳入现有医疗体系的监管、融资和服务提供结构的挑战。我们的研究结果总结了现有研究，并有助于指导个性化医疗治理领域的进一步政策制定和研究。
