The Promise and Perils of Open Medical Data

Hastings Center Report 46 (1):6-7 (2016)
  Copy   BIBTEX

Abstract

Not long ago I visited the Personal Genome Project's website. The PGP describes its mission as “creating public genome, health, and trait data.” In the “Participant Profiles” section, I found several entries that disclosed the names of individuals along with their date of birth, sex, weight, height, blood type, race, health conditions, medications, allergies, medical procedures, and more. Other profiles did not feature names but provided all of the other details. I had no special access to this information. It is available to absolutely anyone with Internet access. The PGP is part of a trend known as “open data.” Many government and private entities have launched initiatives to compile very large data resources and to make them available to the public. President Obama himself has endorsed open data by issuing a May 2013 executive order directing that, to the extent permitted by law, the federal government must release its data to the public in forms that make it easy to locate, access, and use

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 76,101

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Genomic research data: open vs. restricted access.David B. Resnik - 2010 - IRB: Ethics & Human Research 32 (1):1.
Bodies of data: genomic data and bioscience data sharing.Pilar N. Ossorio - 2011 - Social Research: An International Quarterly 78 (3):907-932.
Big Bad Data: Law, Public Health, and Biomedical Databases.Sharona Hoffman & Andy Podgurski - 2013 - Journal of Law, Medicine and Ethics 41 (s1):56-60.
Data Science and Mass Media: Seeking a Hermeneutic Ethics of Information.Christine James - 2015 - Proceedings of the Society for Phenomenology and Media, Vol. 15, 2014, Pages 49-58 15 (2014):49-58.

Analytics

Added to PP
2016-01-20

Downloads
15 (#699,689)

6 months
1 (#447,993)

Historical graph of downloads
How can I increase my downloads?