University of Milan.
Am J Bioeth. 2024 Mar;24(3):71-85. doi: 10.1080/15265161.2023.2180108. Epub 2023 Mar 6.
This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current "diversity and inclusion" efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from benefitting from precision medicine outputs). It argues that efforts for inclusion upstream are not corresponded downstream, and this unbalance jeopardizes the equitable capacities of the projects. It concludes that enhanced focus on socio-environmental determinants of health and aligned public health interventions as precision medicine outputs would be to the benefit of all and especially of those who are most at risk of (upstream as well as downstream) exclusion.
本文从利益分配的角度,对“所有人研究计划”(美国)和“英国基因组学”所采用的精准医学方法提出了质疑,认为当前的“多样性和包容性”努力并不能防止排外现象,除非重新审视项目的框架和范围,从公共卫生的角度出发。本文基于文献分析和实地访谈,分析了在前期(参与精准医学研究)和后期(从精准医学成果中受益)解决潜在排斥模式的努力。它认为,前期的包容性努力并没有得到后期的回应,这种不平衡危及了项目的公平性。它的结论是,更多地关注健康的社会环境决定因素,并将公共卫生干预措施作为精准医学的产出,将使所有人受益,尤其是那些最容易受到(前期和后期)排斥的人。