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N = many me’s: self-surveillance for Precision Public Health

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Abstract

This paper focuses on Precision Public Health (PPH), described in the scientific literature as an effort to broaden the scope of precision medicine by extrapolating it towards public health. By means of the “All of Us” (AoU) research program, launched by the National Institutes of Health in the U.S., PPH is being developed based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness the data collected for precision medicine to be able to tailor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the ‘intimacy’ of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating ‘diversity’, at the same time appeal to and constitute identity, defining individuals as ‘data sharing subjects’. Although PPH is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on ‘citizenship’ in terms of empowerment (front), it is the ‘bio’ prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal challenges that often underlie public health issues can be sufficiently dealt with based on the way ‘diversity’ is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program.

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Notes

  1. HIPAA is United States legislation that provides data privacy and security provisions for safeguarding medical information.

  2. https://allofus.nih.gov/news-events-and-media/news/restoring-trust-medical-research-among-african-americans.

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Correspondence to Mira W. Vegter.

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Vegter, M.W., Landeweerd, L. & Zwart, H.A.E. N = many me’s: self-surveillance for Precision Public Health. BioSocieties 17, 78–98 (2022). https://doi.org/10.1057/s41292-020-00202-8

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  • DOI: https://doi.org/10.1057/s41292-020-00202-8

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