Search Results
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… Participating in genomics research is an opportunity to support scientific exploration … prevent, detect and better treat disease. In some cases, research participants may also gain some individual benefit, … A wide range of genomic research studies need participants, each with …
Fact Sheet
Participation in genomics research is essential for improving the health of everyone.
… are more than 99.9% identical among people. The 0.1% genomic differences come from variations among the nearly 3 … who have given permission for their DNA to be used for research are from European ancestry, making many populations … Research Institute (NHGRI) is working to enhance the participation of individuals from groups that have …
Clinical Research
FAQs for participants in the Autoinflammatory Diseases Study.
… What does study participation look like? We tailor study activities to meet … for parents of affected children Leukapheresis (rare) Research bone marrow aspiration and biopsy (rare; age 12 or … tests including RNA sequencing, cytogenetics, comparative genomic hybridization, single nucleotide polymorphism (SNP), …
Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes, centers, and offices (ICOs) on the investigator-initiated ELSI Research Grants (R01, R21, R03). Program Officer(s) contact information is also included for each ICO.
… The following are research areas of interest that have been identified by the … and offices (ICOs) on the investigator-initiated ELSI Research Grants ( R01 , R21 , R03 ). Program Officer(s) … at the Macro-Level. Contact: Rene Sterling, PhD, MHA Genomic Research Design and Implementation. Contact: Nicole …
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… participants in biomedical, clinical and social-behavioral research can provide insights and discoveries that could not … model organisms or other methods. All federally-funded research with human participants such as that supported by … clarify the benefits and risks of participating in the research. …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… 13, 2016, was to strengthen privacy protections law for research participants. The new law specifically requires … is collected from participants as part of federally-funded research. … who conduct sensitive, health-related human subjects research be issued Certificates of Confidentiality . …
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
… Genomic studies are increasingly integral to the advancement of a spectrum of disease-based research. As knowledge stemming from the completion of the … technologies become increasingly affordable, genomics research is playing an ever-larger role across biomedical …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… about the risks and benefits of participating in a research project. … consent process and consent form should reflect the research uses for which samples, genomic data, and health information might be shared. … family members. For example, learning about a relative's genomic results could influence someone's decision to get …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… When conducting clinical research studies, scientists may discover new health-related … appropriate for the scientists to look for and share such research findings. … research results (IRRs) and incidental findings (IFs) from genomic research. These issues are not new or unique to …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… we are updating the way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted access to genomic summary results for most of the studies we support in order to advance health or further research purposes. These summary results are importantly …