Methylation array data can simultaneously identify individuals and convey protected health information: an unrecognized ethical concern

Robert A Philibert; Nicolas Terry; Cheryl Erwin; Winter J Philibert; Steven RH Beach; Gene H Brody

doi:10.1186/1868-7083-6-28

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Methylation array data can simultaneously identify individuals and convey protected health information: an unrecognized ethical concern

Journal article

Open access

Methylation array data can simultaneously identify individuals and convey protected health information: an unrecognized ethical concern

Robert A Philibert, Nicolas Terry, Cheryl Erwin, Winter J Philibert, Steven RH Beach and Gene H Brody

Clinical epigenetics, Vol.6(1), pp.28-28

2014

DOI: 10.1186/1868-7083-6-28

PMCID: PMC4391334

PMID: 25859287

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https://doi.org/10.1186/1868-7083-6-28View

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Abstract

Background Genome-wide methylation arrays are increasingly used tools in studies of complex medical disorders. Because of their expense and potential utility to the scientific community, current federal policy dictates that data from these arrays, like those from genome-wide genotyping arrays, be deposited in publicly available databases. Unlike the genotyping information, access to the expression data is not restricted. An underlying supposition in the current nonrestricted access to methylation data is the belief that protected health and personal identifying information cannot be simultaneously extracted from these arrays. Results In this communication, we analyze methylation data from the Illumina HumanMethylation450 array and show that genotype at 1,069 highly informative loci, and both alcohol and smoking consumption information, can be derived from the array data. Conclusions We conclude that both potentially personally identifying information and substance-use histories can be simultaneously derived from methylation array data. Because access to genetic information about a database subject or one of their relatives is critical to the de-identification process, this risk of de-identification is limited at the current time. We propose that access to genome-wide methylation data be restricted to institutionally approved investigators who accede to data use agreements prohibiting re-identification.

Ethics

Genetics

DNA methylation

Research

Confidentiality

Methylation array

Details

Title: Subtitle: Methylation array data can simultaneously identify individuals and convey protected health information: an unrecognized ethical concern
Creators: Robert A Philibert - Department of Psychiatry, University of Iowa, Rm 2-126 MEB, 500 Newton Road, Iowa City, IA 52242 USA
Nicolas Terry - Indiana University, Robert H. McKinney School of Law, 530 W. New York St, Indianapolis, IN 46202 USA
Cheryl Erwin - Departments of Medical Education and Psychiatry, Texas Tech University Health Sciences Center, 3601 4th St, Lubbock, TX 79430 USA
Winter J Philibert - Department of Psychiatry, University of Iowa, Rm 2-126 MEB, 500 Newton Road, Iowa City, IA 52242 USA
Steven RH Beach - Center for Family Research, University of Georgia, 1905 College Station Road, Athens, GA 30602 USA
Gene H Brody - Center for Family Research, University of Georgia, 1905 College Station Road, Athens, GA 30602 USA
Resource Type: Journal article
Publication Details: Clinical epigenetics, Vol.6(1), pp.28-28
DOI: 10.1186/1868-7083-6-28
PMID: 25859287
PMCID: PMC4391334
NLM abbreviation: Clin Epigenetics
ISSN: 1868-7075
eISSN: 1868-7083
Publisher: BioMed Central; London
Language: English
Date published: 2014
Academic Unit: Roy J. Carver Department of Biomedical Engineering; Psychiatry; Iowa Neuroscience Institute
Record Identifier: 9984070899602771

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