Saturday, July 5, 2025 7/5/2025

A Risk Management Framework for Identifiability in Genomics Research

Award Number: R01HG006844
ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/21/2012
PERIOD OF PERFORMANCE END DATE: 07/31/2021

Group Awards By:

View Award Description

A Risk Management Framework for Identifiability in Genomics Research - The past decade has witnessed numerous demonstrations that genomic data can be traced back to the corresponding named individuals. These attacks exploit various collections, including the NIH Database of Genotypes and Phenotypes (dbGaP), the 1000 Genomes Project, and the Beacon Project of the Global Alliance for Genomics and Health, and are often reported in the popular media. At the same time, research conducted in the first phase of this grant (from 2012-2016) showed that such re-identification attacks often represent worst- case, non-generalizable scenarios. Specifically, it was shown that these attacks often focus on the possibility of attack - and not its probability given the wide range of factors often at play in practice. By focusing on the possible, such investigations can lead policy makers to believe that de-identification is a useless activity. However, our research showed that de-identification is only one part of a larger strategy of deterrents that can be used to manage risk. By intelligently combining de-identification with other technical risk mitigation approaches (e.g., controlled access) and societal constructs (e.g., data use agreements and penalties), genomic data sharing solutions can be developed with appropriate levels of risk and utility for scientists and society. While our research laid the foundation for managing identification risk in genomic data sharing, significant questions remain regarding its translation into practical guidance. In particular, risk management models must be specialized to the type of data that is shared, the types of penalties (or punishments) available, and the costs of adopting and administering deterrence mechanisms. Thus, in the second phase of this research project, we propose to augment risk-based re-identification management frameworks to model and assess the deterrence approaches invoked by existing repositories, such as dbGaP (which holds a collection of smaller historical datasets from completed studies), as well as emerging initiatives, such as the Precision Medicine Initiative. This project will pursue three specific aims, designed to work in harmony, but at the same time sufficiently independent that if one fails, the research will still yield fruitful risk management guidance for genomic databases: 1) Develop game theoretic models to assess re-identification attacks at different levels of detail in genomic data sharing (e.g., aggregate summaries of the proportion of variants in case vs. control groups in association studies); 2) Characterize and measure the costs associated with common re-identification deterrence approaches for genomic data (e.g., physical investigatory reviews and virtual audits of IT system use); and 3) Optimize the parameterization of a deterrence policy (e.g., the amount of damages for violation of a data use agreement or the amount of time to withhold data from an attacker/investigator) given the expected value of genomic data. We will evaluate these approaches with a large repository of de-identified genomic and electronic medical records in use at a large academic medical center, datasets hosted at two federal repositories, and a web system that presents summary statistics from a cohort of 9000 participants.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2022 ( Subtotal = -$15 )
2022	2019	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	9	12/21/2021	NON-COMPETING CONTINUATION	-$15
														Subtotal = -$15

Issue Date FY: 2019 ( Subtotal = $240,637 )
2019	2019	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	9	8/1/2019	NON-COMPETING CONTINUATION	$240,637
														Subtotal = $240,637

Issue Date FY: 2018 ( Subtotal = $240,946 )
2018	2018	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	8	8/2/2018	NON-COMPETING CONTINUATION	$240,946
														Subtotal = $240,946

Issue Date FY: 2017 ( Subtotal = $249,553 )
2017	2017	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	002	7	9/11/2017	NON-COMPETING CONTINUATION	$249,553
2017	2016	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	6	1/17/2017	COMPETING CONTINUATION	$625,874
2017	2015	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	001	5	1/17/2017	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	-$625,874
														Subtotal = $249,553

Issue Date FY: 2016 ( Subtotal = $268,434 )
2016	2016	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	003	6	9/27/2016	COMPETING CONTINUATION	$268,434
2016	2015	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	372320011	DAVIDSON	USA	Human Genome Research	002	5	9/26/2016	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$0
2016	2015	VANDERBILT UNIVERSITY HOSPITAL, CHILDREN'S REHAB UNIT	1161 21ST AVENUE SOUTH	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	4	7/23/2016	NON-COMPETING CONTINUATION	-$332,498
2016	2015	VANDERBILT UNIVERSITY MEDICAL CENTER	1161 21ST AVE S STE D3300 MCN	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	001	5	7/23/2016	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$332,498
														Subtotal = $268,434

Issue Date FY: 2015 ( Subtotal = $341,249 )
2015	2015	VANDERBILT UNIVERSITY HOSPITAL, CHILDREN'S REHAB UNIT	1161 21ST AVENUE SOUTH	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	4	6/24/2015	NON-COMPETING CONTINUATION	$341,249
														Subtotal = $341,249

Issue Date FY: 2014 ( Subtotal = $343,000 )
2014	2014	VANDERBILT UNIVERSITY HOSPITAL, CHILDREN'S REHAB UNIT	1161 21ST AVENUE SOUTH	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	3	8/21/2014	NON-COMPETING CONTINUATION	$343,000
														Subtotal = $343,000

Issue Date FY: 2013 ( Subtotal = $334,251 )
2013	2013	VANDERBILT UNIVERSITY HOSPITAL, CHILDREN'S REHAB UNIT	1161 21ST AVENUE SOUTH	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	2	7/3/2013	NON-COMPETING CONTINUATION	$334,251
														Subtotal = $334,251

Issue Date FY: 2012 ( Subtotal = $395,184 )
2012	2012	VANDERBILT UNIVERSITY HOSPITAL, CHILDREN'S REHAB UNIT	1161 21ST AVENUE SOUTH	NASHVILLE	TN	37232	DAVIDSON	USA	Human Genome Research	000	1	9/20/2012	NEW	$395,184
														Subtotal = $395,184

Grand Total All Awards = $2,413,239

Top

All Categories

About

Search

Reports

Data Submission

Award Information

A Risk Management Framework for Identifiability in Genomics Research

Award Number: R01HG006844

ORGANIZATION: NATIONAL HUMAN GENOME RESEARCH INSTITUTE

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 09/21/2012

PERIOD OF PERFORMANCE END DATE: 07/31/2021

Federal Websites

Department of Health & Human Services

HHS Operating Divisions

HHS Staff Divisions

Download A Document Viewer