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- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program2
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program1
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Clinical Genome (ClinGen) Resource1
- Genomic Innovator Awards1
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)2
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… whether, and with whom, their post-mortem results of clinical relevance should be shared, and any authorization to … not to learn about a piece of information that has clinical significance for their child. Researchers should … additional information, read: American Society of Human Genetics Board of Directors, American College of Medical …
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… human gene-editing research. This initiative examined the clinical, ethical, legal and social implications of human … background of gene editing and CRISPR in particular, the clinical applications of gene editing, germline … seven overarching principles to guide the research and clinical use of genome editing technologies. Most notably, …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605 ; Susan M. … Genetic Disease, Workplace Discrimination, Laws About Genetics, Gene Patents … The Genome Statute and Legislation …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… when their genomic information is used for research, clinical applications or other uses. This page summarizes … health information held at grantee institutions. Use of Clinical Samples in Research Specimens collected in medical … of genomic testing has gone from rare to routine in many clinical settings. This type of testing has clear clinical …
Explainer
Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.
… to transform how population descriptors are used in human genetics and genomics research. … Racial categories changed … contributing factors, including genomic, biological or clinical traits; components of the natural, built or social … Plain Sight - Reconsidering the Use of Race Correction in Clinical Algorithms . N Engl J Med. 2020;383(9):874-882. …
Policy Issues
En una decisión histórica en junio de 2013, el Tribunal Supremo determinó que el ADN en su forma natural no puede ser patentado.
… de otros grupos, presentaron una demanda contra Myriad Genetics, la USPTO y la University of Utah Research … y validez de las patentes génicas de BRCA1 y BRCA2. Myriad Genetics había sido especialmente activa en la aplicación de … falló a favor de los demandantes y en contra de Myriad Genetics, determinando que los genes BRCA1 y BRCA2 eran …
Policy Issues
Las pruebas genéticas se están convirtiendo en algo más común en la práctica clínica.
… con las Enmiendas para Mejoras de Laboratorios Clínicos ( Clinical Laboratory Improvements Amendments , CLIA) de 1988. …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… changing landscape of data resources. Note: Per the NIH Clinical Trials Policy , NIH-funded clinical trials are expected to register and submit results … participant’s identity. For example, imaging data, rich clinical/phenotypic data, transcripts from focus groups or …
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… world. Treatments for HIV and cancer are being tested in clinical trials in patients. In contrast, germline therapies …