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News Release
Fearful patients who received information about the role of genomics in obesity were less likely to take steps to improve health habits
… … New research suggests that fearful patients who received information about the role of genomics in being overweight … of a virtual physician delivering information about the genomic or behavioral underpinnings of weight and answered … <p>Those in a fearful state who received genomic information rated diet and exercise as less …
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
… Raymond MacDougall … Genomic studies are increasingly integral to the advancement … one million volunteer participants whose genetic information will be studied to help advance understanding … with clear information about the issues relevant to genomic research participation, so that they have the right …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… in genomics research and the increasing availability of genomic information. The awards will fund researchers at … (CEER) program. … The projects will examine the use of genomic information in the prevention and treatment of …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… will support research that incorporates DNA sequence information into electronic medical records. The goal of … and Genomics (eMERGE) network is to better understand the genomic basis of disease and to tailor medical care to individual patients based on their genomic differences. … Incorporating Genomics into EMRs The …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… form should reflect the research uses for which samples, genomic data, and health information might be shared. Investigators should ensure that … to obtain consent for future uses and broad sharing of genomic and phenotypic data. For more information on genomic …
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 … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … reflected on the need to have flexibility in the kind of information provided since people have differing levels of …
Educational Resources
The Genetic Information Nondiscrimination Act (GINA) is federal legislation that makes it unlawful to discriminate against individuals on the basis of their genetic profiles in regard to health insurance and employment.
… Genetic Information Nondiscrimination Act (GINA) … The Genetic Information Nondiscrimination Act (GINA) is federal … in regard to health insurance and employment. … Genetic Information Nondiscrimination Act, GINA, Federal Legislation, …
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases.
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… Finding accurate and reliable information on genetic and rare diseases among the millions … users quickly discover, an enormous amount of health information is available online. The material provided is for … or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… topics such as a brief description of the underlying genomic science, the study design, the diseases(s) or … asking for your permission to collect samples and health information from you for a research study on [specific … [condition, if applicable]. We will store your samples, genomic data, and health information, and share them, now and …
Administrative
The Information Technology Branch provides leadership and service for information technology resources at NHGRI.
… The Information Technology Branch (ITB) provides leadership and service for all information technology (IT) resources for the National Human … and administrative support of computer networks. Information Resource Management ITB researches federal and IT …