Genome Privacy: Challenges, Technical Approaches to Mitigate Risk, and Ethical Considerations in the United States

Annals of the New York Academy of Sciences, 2016

15 Pages Posted: 10 Oct 2016  

Shuang Wang

University of California, San Diego (UCSD)

Xiaoqian Jiang

University of California, San Diego (UCSD)

Siddharth Singh

University of California, San Diego (UCSD)

Rebecca Marmor

University of California, San Diego (UCSD)

Luca Bonomi

University of California, San Diego (UCSD)

Dov Fox

University of San Diego: School of Law

Michelle Dow

University of California, San Diego (UCSD)

Lucila Ohno-Machado

University of California, San Diego (UCSD)

Date Written: October 6, 2016

Abstract

Accessing and integrating human genomic data with phenotypes is important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches. In addition, several types of studies require privacy-preserving linkage of genotype and phenotype information across different locations (e.g., genotypes stored in a sequencing facility and phenotypes stored in an electronic health record) to accelerate discoveries. The computer science community has developed a spectrum of techniques for data privacy and confidentiality protection, many of which have yet to be tested on real-world problems. In this article, we discuss clinical, technical, and ethical aspects of genome data privacy and confidentiality in the United States, as well as potential solutions for privacy-preserving genotype-phenotype linkage in biomedical research.

Keywords: Genome Privacy and Confidentiality, Record Linkage, Ethics, Privacy Law

Suggested Citation

Wang, Shuang and Jiang, Xiaoqian and Singh, Siddharth and Marmor, Rebecca and Bonomi, Luca and Fox, Dov and Dow, Michelle and Ohno-Machado, Lucila, Genome Privacy: Challenges, Technical Approaches to Mitigate Risk, and Ethical Considerations in the United States (October 6, 2016). Annals of the New York Academy of Sciences, 2016. Available at SSRN: https://ssrn.com/abstract=2849252

Shuang Wang

University of California, San Diego (UCSD) ( email )

9500 Gilman Drive
Mail Code 0502
La Jolla, CA 92093-0112
United States

Xiaoqian Jiang

University of California, San Diego (UCSD) ( email )

9500 Gilman Drive
Mail Code 0502
La Jolla, CA 92093-0112
United States

Siddharth Singh

University of California, San Diego (UCSD)

9500 Gilman Drive
Mail Code 0502
La Jolla, CA 92093-0112
United States

Rebecca Marmor

University of California, San Diego (UCSD) ( email )

9500 Gilman Drive
Mail Code 0502
La Jolla, CA 92093-0112
United States

Luca Bonomi

University of California, San Diego (UCSD) ( email )

9500 Gilman Drive
Mail Code 0502
La Jolla, CA 92093-0112
United States

Dov Fox (Contact Author)

University of San Diego: School of Law ( email )

5998 Alcalá Park
San Diego, CA 92110
United States
(619) 260-4600 (Phone)

HOME PAGE: http://www.sandiego.edu/law/news/news_releases/newslist.php?_focus=44957

Michelle Dow

University of California, San Diego (UCSD) ( email )

9500 Gilman Drive
Mail Code 0502
La Jolla, CA 92093-0112
United States

Lucila Ohno-Machado

University of California, San Diego (UCSD) ( email )

9500 Gilman Drive
Mail Code 0502
La Jolla, CA 92093-0112
United States

Register to save articles to
your library

Register

Paper statistics

Downloads
34
Abstract Views
196
PlumX