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- Ethical, Legal and Social Implications (ELSI) Research Program2
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program4
- Enhancing Opportunities in Computational Genomics and Data Science1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium1
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… In the United States and around the world, scientific institutions are developing recommendations to … related to gene editing: the history of gene editing, the scientific background of gene editing and CRISPR in … from public meetings and stakeholders in and out of the scientific community, the report identified seven overarching …
Explainer
Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.
… use of population descriptors in research is a critical scientific issue that is important for advancing genomic … to harms, such as justifying eugenics, promoting scientific racism , and marginalizing groups. In turn, …  … Racial categories changed over time due to shifts in scientific, political and social thinking about race and …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… the NIH’s expectation for submission and release of scientific data, with the following exception: for genomic … NIH data sharing policy information, please visit NIH's Scientific Data Sharing website . … Note: The NIH Data … Data Sharing Policy ( NOT-OD-14-124 ), see the NIH Scientific Data Sharing website . Resources include: Data …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… information, are critical for the success of most human scientific research. Researchers and research participants …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… in genomics research is an opportunity to support scientific exploration of the genome and to help NIH in its … of involvement, and it is important to understand the scientific purpose of any study and any potential personal … The primary purpose of research studies is to advance scientific knowledge, although you may receive some care as …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… are the results for a specific study participant from a scientific investigation. For example, in genomics research, … appropriate protections for study participants, to the scientific community to be used in research beyond the …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… possible to facilitate future research and increase the scientific value of the data. For NIH-funded research, … cancer, or psychiatric disorders), development of new scientific methods, or the study of where different groups of … samples/data for secondary research use maximizes their scientific utility and promotes the achievement of public …
Policies and Guidance
This page provides an overview of Resource Sharing Plans, a required document in most NIH funding applications. Most applicants for NIH funding must provide a Resource Sharing Plan (RSP) documenting plans for sharing resources that result from their federally funded work. NIH Policies that govern the sharing of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy.
… is a separate set of NIH policies regarding the sharing of scientific data. As of January 25, 2023, plans for sharing scientific data and genomic data are to be documented via a … . If you have questions about the distinction between scientific data and resources, consult the relevant NHGRI …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… When conducting genomics research, two essential values of scientific research should be balanced: the need to share data broadly to maximize its use for ongoing scientific exploration. the need to protect research … Act  (HIPAA) aim to balance efforts to promote scientific progress and protect patient privacy. This is …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… testing. There are several reports created by policy and scientific experts seeking to advise Federal agencies on how …