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Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… research. Dr. Shawn Burgess' lab at NHGRI has developed a high-throughput pipeline that can create multiple, simultaneous …
Policy Issues
Scientists have edited genomes for many years, but CRISPR technology has improved the speed, cost, accuracy, and efficiency of genome editing
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… recombination is that it is inaccurate and has a high rate of error when the injected DNA fragments insert … J., Xu, L. S., Gallardo, V., . . . Burgess, S. M. (2015). High-throughput gene targeting and phenotyping in zebrafish using …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… data or other molecular data produced by array-based or high-throughput sequencing technologies. NHGRI's Expectation Under …
Policy Issues
Hay leyes y polÃticas que sirven para proteger la privacidad de la información genómica de un individuo.
… la Evaluación del Recién Nacido que Salva Vidas  ( Newborn Screening Saves Lives Reauthorization Act ) apoya los …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest. Definitions …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest. Definitions …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… of colorectal cancer can assess disease risk and guide screening and preventive measures. Other tests can predict …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… de-identified blood spots taken as part of the newborn screening public health program to conduct epidemiological, … the research use of de-identified blood spots from newborn screening. Revisions to the Common Rule in 2018 reversed this … or discrimination if research reveals the group to have a high risk of harboring a genetic variant associated with a …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… that the testing was a way of determining whether the high incidence of repetitive-stress injuries among its …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… will learn something about your health through the initial screening procedure and ongoing follow-up screening. For example, you will be told results of blood …