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- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program4
- Genomics-Enabled Learning Health Systems (gLHS)1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Encyclopedia of DNA Elements (ENCODE) Project1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium1
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… with disease risk. In the case of common diseases, such as diabetes, many genetic changes and environmental influences …
Policy Issues
Genome editing is a method that lets scientists change the DNA of many organisms, including plants, bacteria, and animals.
… diseases with a genomic basis, like cystic fibrosis and diabetes. There are two different categories of gene … a gene editing treatment to help her fight leukemia, a type of cancer. These scientists did not use CRISPR to treat …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… to screen for several other medical conditions such as diabetes and alcoholism. EEOC and BNSF announced a mediated …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… instructions on submitting the data (Step 7). For Step 2: Please complete the relevant template below or send the … of the data after the basic translation of raw input Level 2: Data after an initial round of analysis or computation to … greater risk of re-identification or suffering harm, and 2) protective measures such as de-identification and …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… play a role in diseases such as cancer, heart disease, diabetes and glaucoma. [If applicable] The specific purpose … and learning about their genomes (though the amount and type of results that participants might receive is often … We are requesting your permission to perform [specify type of analysis, i.e., whole genome and/or whole exome …
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.
… lived somewhere in Africa approximately 300,000 years ago, 2 and physical barriers to the migration of humans, such as … Med. 2019;21(8):1744-1750. doi: 10.1038/s41436-018-0429-2 Population descriptors and healthcare Borrell LN, … from the NHLBI TOPMed program . Cell Genom. 2022;2(8):100155. doi:10.1016/j.xgen.2022.100155 National …
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.
… (1) format of the resources they intend to share; (2) structures and facilities for long-term maintenance of the …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… is that insurers may not be able to easily evaluate what type of genetic test was performed, whether the test was …
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… one that proposed the use of CRISPR to edit the T cells (a type of immune cell) of patients suffering from some types of … the first studies in the US to use CRISPR in humans. 1 , 2 Because CRISPR is an important tool for basic genomics … first time. Nature , November 15, 2016. [ Full Text ] [2] Reardon, S. First CRISPR clinical trial gets green light …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… because they are part of an identifiable population, and (2) potential risks to an identifiable population to which … and to give participants a framework for deciding which type of results they might be interested in receiving. If …