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
Date Written: July 11, 2016
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: Suggested Citation