Exploring genetic privacy and identity in communities
Official title: Genetic Privacy and Identity in Community Settings: CEER Final Meeting Administrative Supplement
Funded at Vanderbilt University Medical Center · NIH-10999820 · Data updated 2026-11-12
This study looks at how people in communities think about and handle their genetic privacy, especially with the rise of at-home genetic tests, and it aims to understand how media influences these views and the risks involved in sharing genetic information.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Vanderbilt University Medical Center NIH-funded |
| Lab location | 1 site (Nashville, United States) |
| Project start | February 23, 2024 |
| Project end | June 30, 2025 |
| Funding year | 2024 |
| Award (this year) | $82,563 |
| NIH project number | 3RM1HG009034-08S1 |
| Project ID | NIH-10999820 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include individuals who have engaged with direct-to-consumer genetic testing or those concerned about the privacy of their genetic data.
✕Less likely to help
Patients who have not participated in genetic testing or do not have concerns about genetic privacy may not benefit from this research.
What this research studies
This research investigates how genetic privacy and identity are perceived and managed within community settings. It examines the complexities of genetic privacy, including individuals' rights to control their genetic data and the implications of direct-to-consumer genetic testing. The study also explores how media representations influence public perceptions of genetic privacy and assesses the risks of re-identification from genomic information. By analyzing these factors, the research aims to provide insights into the evolving landscape of genetic privacy in the context of changing laws and societal norms.
Why it matters
Potential benefit: If successful, this research could enhance understanding of genetic privacy, leading to better protections for individuals' genetic information.
How similar studies have gone: Previous research has shown success in understanding genetic privacy issues, but this study aims to address new challenges in a rapidly evolving field.
Where this research is happening
-
Vanderbilt University Medical Center
Nashville, United States Active
Researchers
- Principal investigator: Malin, Bradley a. — Vanderbilt University Medical Center
- Study coordinator: Malin, Bradley a.
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.