Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2017 Jul;47(4):19-29.
doi: 10.1002/hast.736.

The Precision Medicine Nation

Maya Sabatello, Paul S Appelbaum

The Precision Medicine Nation

Maya Sabatello et al. Hastings Cent Rep. 2017 Jul.

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.

PubMed Disclaimer

References

    1. The Precision Medicine Initiative Working Group. The Precision Medicine Initiative Cohort Program – Building a Research Foundation for the 21st Century Medicine. 2015 Sep 17;:1–6. at 5, at http://www.himss.org/News/NewsDetail.aspx?ItemNumber=44601.
    1. Heath D, Rapp R, Taussig KS. Genetic Citizenship. In: Nugent D, Vincent L, editors. Companion to the Anthropology of Politics. Malden; MA, USA: Wiley-Blackwell; 2008. pp. 152–67.
    2. Sabatello M. Children's Bioethics: The International Biopolitical Discourse on Harmful Traditional Practices and the Right of the Child to Cultural Identity. Leiden; Boston: Martinus Nijhoff Publishers; 2009. pp. 215–220.
    3. Landy DC, et al. How Disease Advocacy Organizations Participate in Clinical Research: A Survey of Genetic Organizations. Genetics in Medicine. 2012;14(no. 2):223–228. at 226-7. - PubMed
    4. Wehling P. The “Technoscientization” of Medicine and Its Limits: Technoscientific Identities, Biosocialities, and Rare Disease Patient Organizations. Poiesis Prax. 2011;8(no. 2-3):72–74. - PMC - PubMed
    5. Kerr A. Genetics and Citizenship. Society. 2003;40(no. 6):67–82. at 45-46.
    1. Jasanoff S. Science and Citizenship: A New Synergy. Science and Public Policy. 2004;31(no. 2):90–94. at 91.
    1. The White House. Fact Sheet: President Obama's Precision Medicine Initiative. 2015 Jan 30; at https://www.whitehouse.gov/the-press-office/2015/01/30/fact-sheet-presid....
    1. Racine E. Discourse Ethics as an Ethics of Responsibility: Comparison and Evaluation of Citizens Involvement in Population Genomics. Journal of Law, Medicine and Ethics. 2003;31(no. 3):390–97. at 391-3. - PubMed
    2. Busby H, Martin P. Biobanks, National Identity and Imagine Communities: The Case of UK Biobank. Science as Culture. 15(no. 3):850–865. at 239-240, 242-243.