Informed Consent for Genomics Research

Consent Form Examples and Model Consent Language

Page update coming soon! Check back in late 2014.

These consent documents were developed for various National Institutes of Health (NIH) sponsored research projects, including a genome-wide association study from the GENEVA consortium (part of the Genes, Environment and Health Initiative), the NHGRI Medical Sequencing Program, and the 1000 Genomes Project [1000genomes.org].

Although these consent forms were developed for specific research initiatives, they serve as examples of how the issues relevant to genomics research may be presented in the consent form.

Model Consent Language

The following model consent language document represents the compiled work of eMERGE investigators and consultants on consent language for the collection and storage of human biospecimens and data for future research, particularly those collections that have an electronic medical records component. Portions of the language may also be useful for other genetic and genomic research, such as genome-wide association studies or candidate gene studies.

Additional references and links to example consent forms can be found under the Additional Resources section of this resource.

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Last Updated: September 26, 2013