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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.
… The Big Picture Appropriate use of population descriptors in research is a critical scientific issue that is important … often used to distinguish groups of people participating in research and to inform some healthcare decisions.  The … and to advance the use of population descriptors in genomics and biomedical research.  The National Academies of …
The Genomics Landscape
In the April 2021 issue of the Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D. talks about the NIH UNITE program's goal to end structural racism in biomedical research.
… Day, I am seriously excited about highlighting progress in areas that influence the genomics research enterprise — from efforts to end structural … to science education and outreach, to data science policy and strategy. But before you get to those stories, I … answer leads to more questions. For example, people in a family may have the same genetic condition, but each …
Staff
Joy Boyer was a program director in NHGRI's Division of Genomics and Society.
… (ELSI) Research Program since 1996. As a program director in the NHGRI Division of Genomics and Society, Joy oversees a portfolio of research, … research. She coordinates the Centers of Excellence in ELSI Research (CEER) consortium and is the principal … Joy Boyer was a program director in NHGRI's Division of Genomics and Society. …
Research Funding
The three research domains to be considered for support by the NHGRI Ethical, Legal and Social Implications Research Program.
… Genomics and Sociocultural Structures and Values Genomics and the Physical and Social Environments Genomics and Social Justice Shifting Societal Definitions, … the Rights of Individuals and Groups Law, Regulation and Policy Governing Genomics Industry, Commerce and Economics …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
… world are harnessing the power of nature to solve problems in medicine, manufacturing and agriculture. … or fuel, or gain a new ability, such as sensing something in the environment, are common goals of synthetic biology … A deficiency . Vitamin A deficiency causes blindness in 250,000 - 500,000 children every year and greatly …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… available through newly developed genetic tests. In order for patients to have full access to the benefits of … and whether the test is scientifically valid. This is in part because procedures are billed according to a … of genetic testing. There are several reports created by policy and scientific experts seeking to advise Federal …
Organizational Structure
NHGRI’s Office of Genomic Data Science (OGDS) provides leadership, strategic guidance and coordination for NHGRI activities, programs and policies in genomic data science.
… from diverse backgrounds to help implement computational genomics and data science materials at their schools! October … Bettie J. Graham Leadership Award for Enhancing the Genomics Workforce. Congratulations to Drs. Shilpa Garg, … The Office of Genomic Data Science (OGDS) was established in 2021 to: Develop, promote, support and coordinate genomic …
Policy Issues
This glossary contains definitions for commonly used terms (such as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database.
… (such as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database. … for introducing proposed laws or proposals to repeal laws in one house of a legislature. Bills are generally designated … or amend rules that apply to both houses; to deal with issues or matters affecting both houses, such as a concurrent …
Events
Data sharing has been a central tenet of the field of genomics since the Human Genome Project.
… Data sharing has been a central tenet of the field of genomics since the Human Genome Project. While many recognize … and risks while crafting genomic data sharing policies. In this session, the four panelists will describe evolving … Data sharing has been a central tenet of the field of genomics since the Human Genome Project. …
Policy Issues
NHGRI has created the IDE Greenhouse as an educational resource to help increase understanding of the regulation in the genomics context.
… sequencing (NGS) and other genomic tests to be in vitro diagnostic devices (IVDs), a type of medical device. … devices (e.g., heart valve or insulin pump). As a leader in genomic research, NHGRI has created the IDE Greenhouse as … to help understand the regulation in the context of genomics. Genomic studies that were either successfully …