Some Lingering Concerns About the Precision Medicine Initiative

Forthcoming in 43(3 ) Journal of Law, Medicine and Ethics __ (2016)

6 Pages Posted: 11 Jul 2016 Last revised: 12 Oct 2016

See all articles by Mark A. Rothstein

Mark A. Rothstein

University of Louisville - Institute for Bioethics, Health Policy, and Law; University of Louisville - Louis D. Brandeis School of Law

Date Written: July 11, 2016

Abstract

The Precision Medicine Initiative was launched in 2015 by the White House, in partnership with the NIH and other federal government agencies, academic and nonprofit organizations, and private sector entities. The NIH Cohort Program will assemble a repository of genomic information along with health and other records from 1 million volunteers. The goal is to develop individually tailored, precision medicine approaches to predictive health assessments, prevention, and therapies. Although the science is promising, some larger ethical and societal concerns should be addressed, including the following: (1) lack of broad access to expensive health technologies; (2) lack of health literacy and numeracy by individuals and lack of genomics expertise by clinicians; (3) lack of adequate health privacy and nondiscrimination protections; and (4) lack of policies on the increasing use of big data analytics to make fine grained predictions about the health and behavior of individuals.

Keywords: Affordable Care Act, Big data, Genetics, Genomics, Health literacy, Health privacy, Health research, HIPAA Privacy Rule, Personalized medicine, Precision Medicine Initiative

JEL Classification: K31, K32

Suggested Citation

Rothstein, Mark A., Some Lingering Concerns About the Precision Medicine Initiative (July 11, 2016). Forthcoming in 43(3 ) Journal of Law, Medicine and Ethics __ (2016). Available at SSRN: https://ssrn.com/abstract=2807970

Mark A. Rothstein (Contact Author)

University of Louisville - Institute for Bioethics, Health Policy, and Law ( email )

Louisville, KY 40202
United States

HOME PAGE: http://www.louisville.edu/bioethics

University of Louisville - Louis D. Brandeis School of Law ( email )

Wilson W. Wyatt Hall
Louisville, KY 40292
United States

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