Clinical Broad Data Sharing Consent Brochure, Clinical Genome Resource (ClinGen)
This is a printable version of the information from the Clinical Broad Data Sharing Consent Video (see this database). It describes key concepts outlined in the consent form, includes testimonials on the importance of data sharing, and contains information on the risks and benefits involved. The brochure was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care.
Riggs, E. R., Azzariti, D. R., Niehaus, A., Goehringer, S. R., Ramos, E. M., Rodriguez, L. L., Knoppers, B., Rehm, H. L., & Martin, C. L. (2019). Development of a consent resource for genomic data sharing in the clinical setting. Genetics in Medicine, 21(1), 81-88.