Understanding how to protect patient data and biospecimens in research
Official title: YOU GAVE CONSENT BUT DO I HAVE PERMISSION?
Funded at Mayo Clinic Rochester · NIH-10985203 · Data updated 2026-11-12
This study is looking at how to build trust with people who share their biological samples and data for research, making sure their choices about how that information is used are clear and respected, so everyone can feel good about contributing.
Quick facts
| Grant type | R03 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Mayo Clinic Rochester NIH-funded |
| Lab location | 1 site (Rochester, United States) |
| Project start | September 23, 2024 |
| Project end | August 31, 2026 |
| Funding year | 2024 |
| Award (this year) | $161,400 |
| NIH project number | 1R03HG013341-01A1 |
| Project ID | NIH-10985203 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals who are considering contributing their biospecimens or genomic data to biobanks but have concerns about data misuse.
✕Less likely to help
Patients who are not considering contributing biospecimens or data to research may not receive direct benefits from this research.
What this research studies
This research investigates the challenges biobanks face in gaining trust from individuals who contribute their biospecimens and data, particularly genomic data. It aims to develop standards-based models that clarify how permissions for sharing and reusing these biospecimens are communicated and understood by both machines and researchers. By evaluating existing information models, the research seeks to ensure that contributors' choices are respected and that their data is used appropriately. This work will help improve the efficiency and ethical management of biospecimens in research.
Why it matters
Potential benefit: If successful, this research could enhance the trust of patients in biobanks, leading to increased participation and better utilization of biospecimens for medical research.
How similar studies have gone: This research builds on existing efforts to improve data sharing practices in biobanks, suggesting a foundation of prior success in similar approaches.
Where this research is happening
-
Mayo Clinic Rochester
Rochester, United States Active
Researchers
- Principal investigator: Mcgowan, Michelle L — Mayo Clinic Rochester
- Study coordinator: Mcgowan, Michelle L
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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.