Download this Paper Open PDF in Browser

Identifying Participants in the Personal Genome Project by Name

4 Pages Posted: 30 Apr 2013  

Latanya Sweeney

Harvard University

Akua Abu

Harvard College

Julia Winn

Harvard College

Date Written: April 29, 2013

Abstract

We linked names and contact information to publicly available profiles in the Personal Genome Project. These profiles contain medical and genomic information, including details about medications, procedures and diseases, and demographic information, such as date of birth, gender, and postal code. By linking demographics to public records such as voter lists, and mining for names hidden in attached documents, we correctly identified 84 to 97 percent of the profiles for which we provided names. Our ability to learn their names is based on their demographics, not their DNA, thereby revisiting an old vulnerability that could be easily thwarted with minimal loss of research value. So, we propose technical remedies for people to learn about their demographics to make better decisions.

Keywords: data privacy, re-identification, identifiability, HIPAA, personal choice, DNA, genetic privacy

JEL Classification: J10, I18, D71, C81, D81

Suggested Citation

Sweeney, Latanya and Abu, Akua and Winn, Julia, Identifying Participants in the Personal Genome Project by Name (April 29, 2013). Available at SSRN: https://ssrn.com/abstract=2257732 or http://dx.doi.org/10.2139/ssrn.2257732

Latanya Sweeney (Contact Author)

Harvard University ( email )

1737 Cambridge Street
Cambridge, MA 02138
United States

HOME PAGE: http://latanyasweeney.org

Akua Abu

Harvard College ( email )

Cambridge, MA 02138
United States

Julia Winn

Harvard College ( email )

Cambridge, MA 02138
United States

Paper statistics

Downloads
227
Rank
113,533
Abstract Views
1,837