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 information. ensuring any decision to participate is …
A submitted grant application undergoes a two-step, peer-review process to determine its eligibility for funding.
The Genomics Landscape
In the April 2020 edition of The Genomics Landscape, NHGRI Director Eric Green provides an update on the final stage of the Genomics2020 strategic planning process; the NIH website for COVID-19 information, the Gene documentary debut on PBS and more.
… diversions. First, anticipating interest in COVID-19 information, one of the stories below describes some useful information sources about the virus and some specific … government websites are available that provide relevant information basics of the virus (and the disease it causes), …
Frequently asked questions for Investigator-Initiated Research on Genetic Counseling Processes and Practices FOAs (RFA-HG-20-048 and RFA-HG-20-049).
… September 25, 2020 Webinar Information … Funding Opportunity Announcements ( … in genomic medicine which involves including genetic information about an individual as part of their clinical …
NIH released a Request for Information seeking comments on the data submission and access process for dbGaP.
… With this in mind, NIH released today a Request for Information (RFI) seeking public comments on the data … on how to comment, please visit NIH Request for Information on Processes for database of Genotypes and … dbGaP data submission and access statistics, including DAR processing times and data management incidents. Development …
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases.
… 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 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, …
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 viewed the information as threatening and were less likely to take steps … impact, she wanted to determine how to communicate information about genomics and weight so that patients are …
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 … she said, and ways in which doctors might use this information to improve clinical treatment and practice. These … and the effects on healthcare systems, in using this information. The following research groups have been awarded …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… asking for your permission to collect samples and health information from you for a research study on [specific … asking for your permission to collect samples and health information to be stored in a research biobank and used for … your participation in a study involving samples and health information you provided for [insert name of previous project …