Video

Clinical Broad Data Sharing Consent Video, Clinical Genome Resource (ClinGen)

Author(s):

Riggs, Erin Rooney

Azzariti, Danielle R.

Niehaus, Annie

Goehringer, Scott R.

Ramos, Erin M.

Rodriguez, Laura Lyman

Knoppers, Bartha

Rehm, Heidi L.

Martin, Christa Lese

Clinical Genome Resource Education Working Group

Year:

2017

The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form. It include testimonials on the importance of data sharing as well as information on the risks and benefits involved. The video 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.

Research Population:

Adults

Citation:

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.

https://doi.org/10.1038/s41436-018-0017-5

Contact:

[email protected]

Return to Search Results

View online source

Related Research Tools

Form

Consent to Share Genetic and Health Information, Clinical Genome Resource (ClinGen)

This one-page consent form helps to faciliate consent and promote broad genomic data sharing in the clinical setting. The language use on the form…
Brochure

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…
Interview Guide

Interview Guide: Experiences of Sharing Direct-to-Consumer Genetic Testing Results

This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the…
Survey

Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies Survey

This survey assesses views on aspects of the consent process, including willingness to share medical information and DNA for different research…
Scenarios

Scenarios for Ethical and Legal Analysis of Genomic Data Sharing Practices

McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia. These…
Psychometric instrument

Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS)

Peshkin and colleagues developed and tested the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS) to assess parental attitudes about and interest…
Survey

Genetic Literacy and Comprehension (GLAC) Measure

Hooker and colleagues designed the Genetic Literacy and Comprehension (GLAC) measure to assess research participant familiarity with eight…
Survey

Site Specific Tools for Participant Choices for Return of Genomic Results in the eMERGE Network

Several study sites in the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network implemented protocols to enable research…
Video

The Genetics of Alzheimer's (Video)

This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component. This video…
Survey

General Population and Patient Survey, Attitudes about the Ethics of Research on Medical Practices (RoMP)

This self-administered, web-based survey using an experimental between-group design to compare the effects of four informational aids on…
Video

Introduction to Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research

This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process…
Interview Guide

Interview Guide: Genetic Health Professionals’ Experiences with Informed Consent in Diagnostic Genomic Sequencing

This interview guide seeks to understand genetic health professionals' experiences with obtaining informed consent for diagnostic genomic…
Video

Setting up a Biorepository (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research

This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process…
Video

Uses of Data in Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research

This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process…
Video

Security and Privacy (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research

This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process…
Video

Consent (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research

This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process…
Video

Oversight (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research

This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process…