Cited by 79Ethics in Clinical ResearchEthics and bioethics in healthcareBiomedical Ethics and Regulation

The Precision Medicine Nation

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Sabatello, Maya, Appelbaum, Paul S.·2017·Hastings Center Report

Abstract

The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. Drawing on scholarship of nationalism and democracy, we discuss the PMI's construction of what we term “genomic citizenship”; the possible normative obligations arising therefrom; and the ethical, legal, and social challenges that will ensue. Although the PMI is a work in progress, discussion of the existing and emerging issues can facilitate the development of policies, structures, and procedures that can maximize the initiative's ability to produce equitable and socially sensitive outcomes. Our analysis can also be applied to other population‐based, precision medicine research programs.

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Research works printed but not linked: 7

  1. [33]Woolley Citizen Science or Scientific Citizenship? 11 PMC4893207 27260081
  2. [43]Sabatello Appelbaum Raising Genomic Citizens 296 297 PMC4922508 27338605
  3. [45]Cohn EG Henderson GE Appelbaum PS Distributive Justice, Diversity and Inclusion in Precision Medicine 158 PMC5291806 27490116
  4. [48]Gostin LO Vanchieri C Pope A Institute of Medicine (US) Committee on Ethical Considerations for Revisions to DHHS Regulations for Protection of Prisoners Involved in Research Washington DC National Academies Press 2007 38 42 47 20669441
  5. [56]Sabatello Appelbaum Raising Genomic Citizens 296 7 299 301 PMC4922508 27338605
  6. [66]Cohn Henderson Appelbaum Distributive Justice, Diversity and Inclusion in Precision Medicine 157 PMC5291806 27490116
  7. [85]Birnhak M Gosersky D Designated Seats, Dissenting Opinions and Judicial Pluralism Tel-Aviv Law Review ('Iyune Mishpat) 22 no. 2 1999 504 508

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Authors
Sabatello, M., & Appelbaum, P. S.
Affiliations
Columbia University (US)
Venue
Hastings Center Report
Publisher
Wiley
Published
2017-07
Volume
47
Issue
4
Pages
19-29
ISSN
  • 0093-0334 (ISSN-L)
  • 1552-146X
OpenAlex
W2741035068
Cited by
79
References
76
Citations by year
2026: 3 · 2025: 3 · 2024: 2 · 2023: 5 · 2022: 26 · 2021: 6 · 2020: 6 · 2019: 5 · 2018: 21 · 2017: 2
FWCI
8.73
Type
journal article
Language
en
Open access
Locations
  • The Hastings Center Report (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
National Human Genome Research Institute (K01HG008653, U01HG008680, P50HG007257, RM1HG007257)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
Keywords
Precision Medicine Initiative, precision medicine, nationalism, democracy, health policy, patient empowerment, research ethics, social equity
MeSH terms
Humans, Patient Participation, Politics, United States, Genomics, Patient Rights, Biomedical Research, Precision Medicine

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