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Event

Roundtable discussion: "Does genetic and genomic screening keep open the door to eugenics?"

Join us on Wednesday, May 25, as scholars and scientists answer audience questions and address the complexities surrounding historical and present-day eugenics and scientific racism in the context of existing and developing genetic and genomic screening technologies.

… cost-effective, minimal-risk options for prenatal genetic screening and diagnosis for various conditions (variations) … potential benefits than established prenatal and newborn screening programs. Although the individual and public … are clear, scholars have long debated whether screening and sequencing technologies also perpetuate …

Policy Issues

What’s Happening in Genome Editing Right Now?

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

How Does Genome Editing Work?

Scientists have edited genomes for many years, but CRISPR technology has improved the speed, cost, accuracy, and efficiency of genome editing

… 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

Data Sharing Policies and Expectations

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

Privacidad en la genómica

Hay leyes y políticas 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

Genome Statute and Legislation Database

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

Genome Statute and Legislation Database OLD

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

Coverage and Reimbursement of Genetic Tests

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

Privacy in Genomics

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

Genetic Discrimination

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 …