Explore our curated collection of resources including top publication outlets for ELSI scholars, Centers of Excellence in ELSI Research, ELSI databases and research centers, genome research consortia, statutes and legislation related to genomics, and bioethics resources.

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ClinGen is funded by the National Institutes of Health (NIH) to provide a central resource that defines the clinical relevance of genes and variants for use in precision medicine and research.

  • Databases
  • clinical annotation
  • clinical interpretation
  • genomic data
  • phenotypic data
  • data standards
  • clinical relevance
  • Genes

The Clinical Sequencing Evidence-Generating Research (CSER) consortium is a national multi-site research program funded by the National Human Genome Research Institute (NHGRI), the National Cancer Institute (NCI), and the National Institute on Minority Health and Health Disparities (NIMHD) that assesses the effectiveness of integrating genome sequencing into the clinical care of diverse and medically underserved individuals.

  • clinical utility
  • genome sequencing
  • ethical
  • Legal
  • psychosocial
  • genomic data
  • Policy
  • standards

The Electronic Medical Records and Genomics (eMERGE) Network, organized and funded by the National Human Genome Research Institute (NHGRI), combines DNA biorepositories with electronic medical record (EMR) systems for large-scale, high-throughput genetic research in support of implementing genomic medicine.

  • EMR systems
  • electronic medical record
  • DNA biorepositories
  • Genomic medicine
  • Robb Rowley

The Implementing GeNomics In PracTicE (IGNITE) Pragmatic Clinical Trials Network, is a network of research sites that support the implementation of genomics in healthcare by conducting pragmatic clinical trials. The IGNITE I network, ended in 2018, focused on designing methods for incorporating genomic medicine into clinical settings. The IGNITE II network is focused on delivering genomic medicine in real-world clinical settings.

  • electronic medical record
  • clinical decision support
  • genomic information
  • Patient Care
  • sustainability
  • diffusion dissemination
  • Methods
  • clinical groups
  • multi-site
  • diverse

The Newborn Sequencing in Genomic Medicine and Public Health (NSIGHT) program funded research that explored the implications, challenges and opportunities associated with the possible use of genomic sequence information in the newborn period.

  • newborn
  • Newborn screening
  • disorder
  • DNA-based analysis
  • Genomic Sequencing
  • Children

The Undiagnosed Diseases Network is a multi-site research study funded by the National Institutes of Health Common Fund that aims to improve diagnosis and care of patients with undiagnosed diseases by using advanced technologies and genetic data.

  • undiagnosed diseases
  • Disease
  • Diagnosis
  • etiology
  • Clinical Data
  • laboratory data
  • pathophysiology

The Human Hereditary and Health in Africa (H3Africa) consortium includes 51 projects led by African scientists that use genetic, clinical, and epidemiologic methods to identify hereditary and environmental contributions to non-communicable and communicable diseases.

  • Bioinformatics
  • Africa
  • global health
  • Disease
  • genomic science
  • genetic diversity
  • Environment
  • Communicable Diseases
  • non-communicable disorders
  • population-based

The Polygenic Risk Methods in Diverse Populations (PRIMED) Consortium (comprised of NIH program staff, affiliate members, investigators at 7 study sites, and a Coordinating Center) is funded by the National Institutes of Health to develop and evaluate methods improve the predictive capacity of polygenic risk scores for populations of diverse ancestry. ELSI activities in PRIMED are expected to explore the implications of integrating heterogeneous datasets and generating PRS data which may differentially impact individuals of diverse ancestry. This will include considerations of how to conceptualize and use ancestry and other population descriptors in PRS methods development and applications.

  • Polygenic risk scores
  • precision medicine
  • diversity
  • Genetic Risk
  • multi-site