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News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… assembling one million volunteer participants whose genetic information will be studied to help advance understanding … including clinicians, bioethicists, genomic researchers, genetic counselors and institutional review board members …
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … children with the disease. These participants completed a genetic literacy survey, watched an educational video about … genome editing, study participants demonstrated higher genetic literacy levels than estimated.  The NHGRI study …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… their contributions, such as samples and health-related information, are critical for the success of most human … over time. Raise privacy concerns (in part because of the risk of re-identification). Be relevant for family members … storage and use of data. It may be useful to involve genetic counselors in the informed consent process, either …
News Release
Scientists studying the genomes of nearly 5,000 people have pinpointed a genetic variant tied to an increased risk for stroke and cardiovascular disease.
… the genomes of nearly 5,000 people have pinpointed a genetic variant tied to an increased risk for stroke, and have also uncovered new details about an … we're seeing," he said. "We may have found how genetic information controls the regulation of GNMT." The group …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… research and the increasing availability of genomic information. The awards will fund researchers at … program. … The projects will examine the use of genomic information in the prevention and treatment of infectious … The work builds on previous NHGRI-supported research.   Genetic Privacy and Identity in Community Settings …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… careful explanation about how the participant’s genomic information will be used during and after the study, as well … that must be met during this process are: providing key information. confirming the participant understands the … in a few circumstances, for instance when there is minimal risk to participation such as responding to a survey. … IRBs …
Media Availability
Type 2 diabetes is a disease that affects ten percent of the world's population, but the genetics underlying the disease remain poorly understood.
… A comprehensive investigation of the underlying genetic architecture of type 2 diabetes has unveiled the most … look at the genetic differences that increase a person's risk for disease development. The findings, published today … and treat genomic and genetic diseases. Additional information about NHGRI can be found at: www.genome.gov . …
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… As the field of genomics advances, genetic and genomic tests are becoming more common in, and … being analyzed is related to the presence, absence, or risk of a specific disease. Has having a specific genetic … Clinical Utility: Refers to whether the test can provide information about diagnosis, treatment, management, or …
News Release
Researchers at the National Human Genome Research Institute (NHGRI) have developed a new statistical model that can predict the risk for developing diseases by combining information about family member health and lifestyle factors from family members.
… developed a new statistical model that can predict the risk for developing diseases by combining information from family members about their family health … history information to assess which conditions with a genetic component pose a risk to your health and require …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… wonder if participating in genetics research or undergoing genetic testing will lead to being discriminated against … and cures. This page provides an overview of the Genetic Information Nondiscrimination Act (GINA) and …