Precision Medicine for Whom? Public Health Outputs from "Genomics England" and "All of Us" to Make Up for Upstream and Downstream Exclusion

被引:23
作者
Galasso, Ilaria [1 ,2 ]
机构
[1] Univ Milan, Milan, Italy
[2] Univ Milan, I-20122 Milan, Italy
关键词
BIOMEDICAL RESEARCH; health care delivery; health policy; human subjects research; right to health care;
D O I
10.1080/15265161.2023.2180108
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
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.
引用
收藏
页码:71 / 85
页数:15
相关论文
共 48 条
  • [21] Harmon A., 2010, The New York Times
  • [22] Ipsos MORI, 2018, PUBLIC DIALOGUE GENO
  • [23] Jacewicz N., 2016, ATLANTIC
  • [24] From public health genomics to precision public health: a 20-year journey
    Khoury, Muin J.
    Bowen, M. Scott
    Clyne, Mindy
    Dotson, W. David
    Gwinn, Marta L.
    Green, Ridgely Fisk
    Kolor, Katherine
    Rodriguez, Juan L.
    Wulf, Anja
    Yu, Wei
    [J]. GENETICS IN MEDICINE, 2018, 20 (06) : 574 - 582
  • [25] Precision Public Health for the Era of Precision Medicine
    Khoury, Muin J.
    Iademarco, Michael F.
    Riley, William T.
    [J]. AMERICAN JOURNAL OF PREVENTIVE MEDICINE, 2016, 50 (03) : 398 - 401
  • [26] Kitcher Philip., 1996, The Lives to Come: The Genetic Revolution and Human Possibilities
  • [27] MacKay D., 2021, The Stanford Encyclopedia of Philosophy
  • [28] Marmot M., 2005, SOCIAL DETERMINANTS
  • [29] The health gap: the challenge of an unequal world
    Marmot, Michael
    [J]. LANCET, 2015, 386 (10011) : 2442 - 2444
  • [30] Self-reported race/ethnicity in the age of genomic research: its potential impact on understanding health disparities
    Mersha, Tesfaye B.
    Abebe, Tilahun
    [J]. HUMAN GENOMICS, 2015, 9