# A Sociotechnical Approach to Improving Security and Privacy in the Genomic Data Ecosystem

> **NIH NIH R01** · UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN · 2024 · $183,271

## Abstract

PROJECT SUMMARY/ABSTRACT
The dream of open science for genomics is hindered by concerns about genomic data re-identification and the
resulting restrictive data access protocols. The long-term goal is to create a technical ecosystem that can
facilitate more open scientific practices for genomic research. The central motivation is the belief that both equity
and the pace of advancement of genomic science could be increased by easing access to existing genomic
data, including underutilized direct-to-consumer genomic data, through a combination of two technologies:
bringing genomic analysis to participant-stored data and the adoption of sign and mask technology. The rationale
for this project is that these technologies greatly facilitate the recruitment of research participants by creating a
bridge between researchers and potential participants who already possess their own genomic data, signing that
genomic data to re-assure researchers about its provenance and integrity, and masking those portions of the
data that are not required for the analysis at hand from researchers to ensure participant privacy. The central
motivation will be pursued through four specific aims: 1) Develop and evaluate a framework based on bringing
genomic analysis to the data; 2) Design and analyze an offline digital signature system for masked genomic
data; 3) Characterize key aspects of the legal and regulatory context for the genomic data ecosystem; 4) Analyze
the likely acceptance by researchers and usability by participants of new technologies for protecting and sharing
genomic data. The first aim will develop the technologies necessary for carrying out “in-silico” genome tests on
the desktop computers or smartphones of individuals. The second aim will develop the technologies necessary
for individuals to protect sensitive parts of their genomic data while still providing useful integrity assurances to
researchers. The third aim will identify and characterize the significant legal and regulatory challenges that face
an open science approach to genomic research. The fourth aim will use qualitative and quantitative methods to
assess the acceptance, impact, and usability of the technologies developed in studies targeting genomics
researchers and lay users. The research proposed in this application is innovative because it combines technical,
legal, and social scientific methodologies to create a framework for open science in genomics, to characterize
the legal and policy challenges that must be overcome for this framework’s widespread adoption, and to
empirically assess how these technologies can be made most useful for researchers while simultaneously
protecting the rights of research participants. The proposed research is significant because it will facilitate more
rapid advancement for genomic science by providing access to underutilized and more diverse sources of
genomic data, streamline the process of gaining access to potential sources of genomic data while ensuring...

## Key facts

- **NIH application ID:** 10748366
- **Project number:** 5R01HG012249-03
- **Recipient organization:** UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN
- **Principal Investigator:** Carl A Gunter
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $183,271
- **Award type:** 5
- **Project period:** 2022-01-15 → 2025-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10748366

## Citation

> US National Institutes of Health, RePORTER application 10748366, A Sociotechnical Approach to Improving Security and Privacy in the Genomic Data Ecosystem (5R01HG012249-03). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10748366. Licensed CC0.

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