Understanding the ethics of epigenetic prenatal testing and how it affects families and clinicians
Official title: ELSI of epigenetic NIPT: Patient, provider, and community input on clinical implementation
Funded at Children's Mercy Hosp (Kansas City, Mo) · NIH-11375782 · Data updated 2026-11-12
This grant would explore how epigenetic signals from a mother’s blood in prenatal testing could influence decisions, privacy, and care for pregnant people and babies.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Mercy Hosp (Kansas City, Mo) NIH-funded |
| Lab location | 1 site (Kansas City, United States) |
| Project start | September 11, 2026 |
| Project end | April 30, 2030 |
| Funding year | 2026 |
| Award (this year) | $465,146 |
| NIH project number | 1R01HD119556-01A1 |
| Project ID | NIH-11375782 on NIH RePORTER |
Who could benefit from this research
✓Could help
Pregnant people undergoing NIPT and their healthcare providers or advocates.
✕Less likely to help
People not considering NIPT or those not involved in decision making about prenatal testing may see little benefit.
What this research studies
Researchers will study how adding epigenomic information to non-invasive prenatal testing might change informed consent, patient-provider communication, and social views of disability. The work includes gathering perspectives from patients, obstetric providers, and communities to guide responsible implementation. They will analyze what information should be shared, how results could affect decision making, and how to minimize potential harms while improving pregnancy outcomes. The project uses surveys, interviews, and stakeholder input to shape policies and practice around eNIPT. The goal is to balance potential benefits for predicting complications like pre-eclampsia with ethical considerations and patient autonomy.
Why it matters
Potential benefit: If successful, it could lead to clearer guidelines for using epigenetic NIPT in pregnancy, helping families make informed choices and reducing risks of harm or misuse.
How similar studies have gone: Preliminary work shows that stakeholder input can shape ethically responsible testing approaches, but this area is evolving and requires further validation.
Where this research is happening
-
Children's Mercy Hosp (Kansas City, Mo)
Kansas City, United States Active
Researchers
- Principal investigator: Grundberg, Elin — Children's Mercy Hosp (Kansas City, Mo)
- Study coordinator: Grundberg, Elin
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.