4.0 Article Proceedings Paper

Envisioning Future Research and Clinical Practice with a Bioethics Lens: A Word for the Next Generation of Researchers (All of Us Research Program, Activism, and Policy Implications)

Journal

Publisher

JOHNS HOPKINS UNIV PRESS
DOI: 10.1353/hpu.2019.0113

Keywords

Precision medicine; All of Us Research Program; diversity; historical transgressions in research; bioethics; engagement; democratization of research; participants as partners

Funding

  1. NCI NIH HHS [U54 CA118948, U54 CA118623, U54 CA118638] Funding Source: Medline

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Precision medicine, a revolutionary approach to disease prevention and treatment, takes into account individual differences in lifestyle, environment, and biology. Organized by the National Institutes of Health, the All of Us Research Program seeks to engage one million or more volunteers living in the U.S. to contribute their health data over many years. The program seeks to improve health outcomes, fuel the development of new treatments for disease, and catalyze a new era of evidence-based and precise preventive care and medical treatment. Although the concept of precision medicine is promising, if we are to change the treatment paradigm and ensure that the medicines and prevention strategies people are using work for them, those who have been historically underrepresented in research must be included. To accomplish this, conversations will not be easy, and it will take purposeful time and effort to build trust toward action.

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