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      Precision medicine and the problem of structural injustice

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          Abstract

          Many countries currently invest in technologies and data infrastructures to foster precision medicine (PM), which is hoped to better tailor disease treatment and prevention to individual patients. But who can expect to benefit from PM? The answer depends not only on scientific developments but also on the willingness to address the problem of structural injustice. One important step is to confront the problem of underrepresentation of certain populations in PM cohorts via improved research inclusivity. Yet, we argue that the perspective needs to be broadened because the (in)equitable effects of PM are also strongly contingent on wider structural factors and prioritization of healthcare strategies and resources. When (and before) implementing PM, it is crucial to attend to how the organisation of healthcare systems influences who will benefit, as well as whether PM may present challenges for a solidaristic sharing of costs and risks. We discuss these issues through a comparative lens of healthcare models and PM-initiatives in the United States, Austria, and Denmark. The analysis draws attention to how PM hinges on—and simultaneously affects—access to healthcare services, public trust in data handling, and prioritization of healthcare resources. Finally, we provide suggestions for how to mitigate foreseeable negative effects.

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          The “All of Us” Research Program

          (2019)
          Knowledge gained from observational cohort studies has dramatically advanced the prevention and treatment of diseases. Many of these cohorts, however, are small, lack diversity, or do not provide comprehensive phenotype data. The All of Us Research Program plans to enroll a diverse group of at least 1 million persons in the United States in order to accelerate biomedical research and improve health. The program aims to make the research results accessible to participants, and it is developing new approaches to generate, access, and make data broadly available to approved researchers. All of Us opened for enrollment in May 2018 and currently enrolls participants 18 years of age or older from a network of more than 340 recruitment sites. Elements of the program protocol include health questionnaires, electronic health records (EHRs), physical measurements, the use of digital health technology, and the collection and analysis of biospecimens. As of July 2019, more than 175,000 participants had contributed biospecimens. More than 80% of these participants are from groups that have been historically underrepresented in biomedical research. EHR data on more than 112,000 participants from 34 sites have been collected. The All of Us data repository should permit researchers to take into account individual differences in lifestyle, socioeconomic factors, environment, and biologic characteristics in order to advance precision diagnosis, prevention, and treatment.
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            Genomics is failing on diversity.

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              The Danish health care system and epidemiological research: from health care contacts to database records

              Abstract Denmark has a large network of population-based medical databases, which routinely collect high-quality data as a by-product of health care provision. The Danish medical databases include administrative, health, and clinical quality databases. Understanding the full research potential of these data sources requires insight into the underlying health care system. This review describes key elements of the Danish health care system from planning and delivery to record generation. First, it presents the history of the health care system, its overall organization and financing. Second, it details delivery of primary, hospital, psychiatric, and elderly care. Third, the path from a health care contact to a database record is followed. Finally, an overview of the available data sources is presented. This review discusses the data quality of each type of medical database and describes the relative technical ease and cost-effectiveness of exact individual-level linkage among them. It is shown, from an epidemiological point of view, how Denmark’s population represents an open dynamic cohort with complete long-term follow-up, censored only at emigration or death. It is concluded that Denmark’s constellation of universal health care, long-standing routine registration of most health and life events, and the possibility of exact individual-level data linkage provides unlimited possibilities for epidemiological research.
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                Author and article information

                Contributors
                sara.green@ind.ku.dk
                barbara.prainsack@univie.ac.at
                ms4075@cumc.columbia.edu
                Journal
                Med Health Care Philos
                Med Health Care Philos
                Medicine, Health Care, and Philosophy
                Springer Netherlands (Dordrecht )
                1386-7423
                1572-8633
                25 May 2023
                25 May 2023
                : 1-18
                Affiliations
                [1 ]GRID grid.5254.6, ISNI 0000 0001 0674 042X, Section for History and Philosophy of Science, Department of Science Education, , University of Copenhagen, Niels Bohr Building (NBB), ; Universitetsparken 5, 2100 Copenhagen Ø, Denmark
                [2 ]GRID grid.5254.6, ISNI 0000 0001 0674 042X, Centre for Medical Science and Technology Studies, Department of Public Health, , University of Copenhagen, ; Oester Farimagsgade 5, 1014 Copengagen, Denmark
                [3 ]GRID grid.10420.37, ISNI 0000 0001 2286 1424, Department of Political Science, , University of Vienna, ; Universitätsstraße 7, 1010 Vienna, Austria
                [4 ]GRID grid.1013.3, ISNI 0000 0004 1936 834X, School of Social and Political Sciences, Faculty of Arts and Social Sciences, , University of Sydney, ; Camperdown, NSW 2006 Australia
                [5 ]GRID grid.21729.3f, ISNI 0000000419368729, Center for Precision Medicine and Genomics, Department of Medicine, , Columbia University, ; New York, USA
                [6 ]GRID grid.21729.3f, ISNI 0000000419368729, Division of Ethics, Department of Medical Humanities and Ethics, , Columbia University, ; New York, USA
                Author information
                http://orcid.org/0000-0001-7011-7202
                https://orcid.org/0000-0002-6335-1532
                http://orcid.org/0000-0003-4444-5389
                Article
                10158
                10.1007/s11019-023-10158-8
                10212228
                37231234
                f1c7831b-b4cf-4c38-9ebb-277404678794
                © The Author(s) 2023

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

                History
                : 24 April 2023
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100011958, Danmarks Frie Forskningsfond;
                Award ID: 0132-00026B
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100002808, Carlsbergfondet;
                Award ID: CF17-0016
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/100000052, NIH Office of the Director;
                Award ID: R01HG010868
                Award Recipient :
                Funded by: Royal Library, Copenhagen University Library
                Categories
                Scientific Contribution

                Medicine
                precision medicine,personalized medicine,structural injustice,equity,healthcare model,medical matthew effects

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