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 … or access to a treatment in development. … A wide range of genomic research studies need participants, each with … any study and any potential personal benefit or risk from participation. Consider the following list of questions …
Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact information is also included.
… The following are research areas of interest that have been identified by the … interpretation, understanding and use of genetic and genomic information and associated technologies.  Genomics … media, electronic medical records, telemedicine, and participation in research on the Internet)  Studies on the …
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), …
Fact Sheet
Diversity among genomics research participants 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 participants unclear about the benefits of their participation and how their data would be used after the …
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 … were not informed of the risks to their health of study participation, or were denied critical medical treatment, … from bench to bedside is ushering in the era of genomic medicine, allowing for more personalized treatments …
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. … To implement one of the law's privacy provisions, … ​ … 21st Century Cures Act, genetic privacy, genomic privacy, researchers and privacy, researchers' …
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 of a spectrum of disease-based research. As knowledge stemming from the completion of the … information about the issues relevant to genomic research participation, so that they have the right tools to …
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. … The informed consent process and consent … form should reflect the research uses for which samples, genomic data, and health information might be shared. … over time. These consent approaches may increase participation of people who have concerns about privacy or do …
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 … research results (IRRs) and incidental findings (IFs) from genomic research. These issues are not new or unique to genomics, but advances in genomic technologies have brought them to the forefront. …
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 … studies we support in order to advance health or further research purposes. These summary results are importantly … of any reported examples of individuals being matched to participation in a research study using genomic summary …