# Genetic Privacy and Identity in Community Settings - GetPreCiSe

> **NIH NIH RM1** · VANDERBILT UNIVERSITY MEDICAL CENTER · 2021 · $1,051,733

## Abstract

Genetic Privacy and Identity in Community Settings (GetPreCiSe), is an NHGRI Center of Excellence in ELSI
Research (CEER) that, in its first four years, established an environment for multi-disciplinary study that produced
innovative ways of studying genetic privacy and identity. Specifically, the center 1) parsed the concept of genetic
privacy into its often conflated constituent components, including: the “right to be let alone,” control and
governance of data, and concerns about downstream uses of data; 2) documented and critically assessed the
privacy practices of direct to consumer genetic testing (DTC-GT) companies; 3) examined how and why people
trade off personal privacy for other social goods and services; 4) used new techniques to explore how film,
television, and social media reflect and affect public perceptions of genetic privacy; and 5) refined understanding
of the risk that people will be re-identified from their genomic information. During this time, many developments
raised new issues of privacy and identity for genetics. First is the growth of DTC-GT, which generates genetic
information used to trace ancestry, acquire health information, find relatives, uncover parentage, and pursue law
enforcement investigations, among other activities. Second, laws and regulations governing data privacy and
security, particularly with respect to genomics, are changing rapidly in the U.S. and abroad. These often conflict
and present new challenges as genomic data move across state and international borders. Third, the creation
of ever larger cohorts, such as the NIH’s All of Us Research Program, raises further dilemmas because some or
all of the genomic and other data participants provide will be made available to investigators working in a variety
of settings and subject to different regulatory regimes. Moreover, participants in these studies may receive
research results, which could be deposited in their electronic health records, making this data subject to clinical
regulation and compelling action by clinical providers who may not have the knowledge or infrastructure to
respond. Thus, as our understanding of genomics increases, so, too, do its multifarious roles and implications
for individuals, families, and society evolve. Given the evolving landscape, in its next four years GetPreCiSe will
address three complementary specific aims: 1) Apply multimodal methods to characterize how social practices
affect, and are affected by, evolving notions of genetic privacy and identity and increased availability of data, 2)
Characterize how emerging legal and regulatory frameworks influence genomic privacy and identity in the US
and abroad, and 3) Engineer and evaluate new technologies and quantitative frameworks that have potential to
intrude on, but also protect, genetic privacy and identity. Recognizing that genetic data processing opportunities
and threats are evolving, GetPreCiSe is designed to be a multi-disciplinary center, focused on training ...

## Key facts

- **NIH application ID:** 10256016
- **Project number:** 5RM1HG009034-06
- **Recipient organization:** VANDERBILT UNIVERSITY MEDICAL CENTER
- **Principal Investigator:** ELLEN WRIGHT CLAYTON
- **Activity code:** RM1 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $1,051,733
- **Award type:** 5
- **Project period:** 2016-05-16 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10256016

## Citation

> US National Institutes of Health, RePORTER application 10256016, Genetic Privacy and Identity in Community Settings - GetPreCiSe (5RM1HG009034-06). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10256016. Licensed CC0.

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