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- Ethical, Legal and Social Implications (ELSI) Research Program2
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program4
- Enhancing Opportunities in Computational Genomics and Data Science1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium1
Fact Sheet
Eugenics is the scientifically erroneous and immoral theory of “racial improvement” and “planned breeding,”
… myths and combat modern-day manifestations of eugenics and scientific racism, particularly as they affect people of … individuals. … What is NHGRI doing to address eugenics and scientific racism? When the HGP began in 1990, there was … of genomics, including the legacies of eugenics and scientific racism in the context of new and emerging genetic …
Educational Resources
Fact sheets explaining complex concepts in genomics research to a non-scientific audience.
… to explain complex concepts in genomics research to a non-scientific audience. Teachers, students and the general … explaining complex concepts in genomics research to a non-scientific audience. … Chromosome Abnormalities, Cloning, … explaining complex concepts in genomics research to a non-scientific audience. … Educational Resources …
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… In the United States and around the world, scientific institutions are developing recommendations to … related to gene editing: the history of gene editing, the scientific background of gene editing and CRISPR in … from public meetings and stakeholders in and out of the scientific community, the report identified seven overarching …
News
NHGRI launched a new round of strategic planning to establish a 2020 vision for genomics research that will accelerate scientific and medical breakthroughs.
… a 2020 vision for genomics research aimed at accelerating scientific and medical breakthroughs. … Accelerating … seek input from a variety of stakeholders, including the scientific and medical communities, non-profit and private … for our research portfolio that is responsive to the scientific community and resonates with people from diverse …
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.
… use of population descriptors in research is a critical scientific issue that is important for advancing genomic … to harms, such as justifying eugenics, promoting scientific racism , and marginalizing groups. In turn, … … Racial categories changed over time due to shifts in scientific, political and social thinking about race and …
About Genomics
Appropriate use of population descriptors in scientific research is critical for the advancement of genomic science and human health for all.
… for adopting best practices within the biomedical and scientific communities. Read the Report: Use of Race, … in Genomics … Appropriate use of population descriptors in scientific research is critical for the advancement of … page … Appropriate use of population descriptors in scientific research is critical for the advancement of …
Fact Sheet
A fact sheet detailing how the project began and how it shaped the future of research and technology.
… demonstrated that production-oriented, discovery-driven scientific inquiry—which did not involve the investigation of … be remarkably valuable and beneficial to the broader scientific community. The project was also a successful … of such scale with deep skepticism. These kinds of massive scientific undertakings have become more commonplace and …
Policies and Guidance
Frequently Asked Questions regarding the NHGRI's Metadata and Phenotypic Data Sharing Expectations.
… that ensures maximal use of participants’ data for scientific discovery, rigor and reproducibility, and more. … to ensure the data are maximally useful to the broader scientific community. … NHGRI uses the NIH definition of … “data that provide additional information intended to make scientific data interpretable and reusable (e.g., date, …
News Release
Oral history videos feature conversations with genomics researchers and an interactive discussion with the institute's three directors.
… Genome Project, NHGRI has made it a priority to enable the scientific and other communities by providing freely … which highlights how there is no one right path toward scientific research as a profession. He also shares how his …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… information, are critical for the success of most human scientific research. Researchers and research participants …