Search Results
Clinical Research
A Longitudinal Natural History Study of Children with Mitochondrial Disease (at the NIH Clinical Center).
… remotely for records and samples collection.   We take privacy and confidentiality very seriously. Your (your …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… increase participation of people who have concerns about privacy or do not want their samples and data used for … disease groups, present particular concerns with regard to privacy, stigmatization, and discrimination. Researchers … critical. Implications for the protection of participants' privacy and confidentiality also should be addressed in the …
Research Funding
The Multi-Omics for Health and Disease Consortium aims to advance the application of multi-omic technologies to study health and disease in ancestrally diverse populations.
… with existing resources, and upholds data sharing and privacy principles. This rich data set will include 1) …
News Release
A two-day international gathering on genomic medicine from more than 25 countries recommended ways to improve the use of genomics in medicine.
… of managing vast amounts of genomic data, and ongoing privacy and consent issues related to sharing this …
The Genomics Landscape
In the December 3, 2020 edition of The Genomics Landscape, Dr. Eric Green spotlights on ELSIhub.
… COVID era; host genomics and vaccinomics; law and genetic privacy; genomics research with indigenous communities; gene … maximizes the utility of generated data while maintaining privacy and consent. In an effort to improve data sharing in …
News Release
A 2018 workshop led by Alaska Native people provides a path towards collaborative, community-driven genomics research.
… Native individuals not remaining anonymous and their privacy being breached, especially given their small …
News Release
NHGRI hosted two Pathway to Independance awardees and supported 18 additional investigators at institutions nationwide.
… University of California at San Diego, Protecting the Privacy of Genomes in Research Studies Hao Wu, Ph.D., …
News Release
Doctors and researchers reunite with patient who received gene therapy for GM1 gangliosidosis.
… party every time her patient Jojo (last name withheld for privacy) comes to visit. But today is extra special. It has …
Policies and Guidance
Guidance describing NHGRI’s position on appropriate third-party involvement.
… sharing data and resources, accessing data, participant privacy and data protection, meeting quality metrics for data …
News Release
NIH awarded grants to six medical centers to select from the most difficult-to-solve medical cases and develop effective approaches to diagnose them.
… data sharing will observe standards of patient privacy, confidentiality and management of health …