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Creating a streamlined consent for sharing genomic and health data using feedback from over 5000 individuals

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ClinGen is an NIH-funded effort to build an authoritative central resource that defines the clinical relevance of genes and variants for use in precision medicine and research.  

One of ClinGen’s main goals is to encourage data sharing from clinicians, clinical and research laboratories, and patients. However,

•Sharing data is easier in a research setting given an established research consent process
•Sharing is hindered in the clinical setting by lack of time and resources


To facilitate the  deposition of de-identified genetic information into public repositories, while respecting patient autonomy and privacy, ClinGen has developed:

A one-page consent form for broad data sharing in the clinical setting

•Length allows for quick initial review
•Language consistent with NIH Genomic Data Sharing Policy & NHGRI Informed Consent Resource

Supplemental online video providing further information on key topics, such as

•Summary vs. individual-level genetic & health information
•Databases where information is likely to be shared
Risks & benefits of data sharing
Stakeholder engagement: 

Members of the U.S. general public were recruited via SSI, a company specializing in online market research, and were surveyed to assess:

-  Knowledge of genetic data sharing concepts

-  Willingness to participate in broad data sharing

-  Perception of value of genetic data sharing

-  General acceptance of model

Demographics (n=5162) (See figure on poster)

Knowledge Assessment:

Participants were asked four true/false questions about genomic data sharing at each of three intervals: baseline, after reviewing the consent form, and after reviewing the video. Topics included current practices, aspects of information to be shared, potential for identifiability, and public access to shared data.  Significant improvement in mean number of correct responses at each interval, suggesting that the materials clearly conveyed these concepts (see figure on poster).

Willingness to Participate:

•After reading the consent form, 54.3% of participants WOULD consent to broad data sharing.
•Of those that answered “No” after reading the consent form, 22% (175/812) changed their minds to “Yes” after watching the video, bringing the total to 71.3% after watching the video.
Value of Genetic Data Sharing:
•At baseline, 64% of participants felt that it was “Somewhat” or “Very Important” for individuals to be able to share their genetic information, regardless of their personal preferences.
•This number increased to 86% after reviewing the consent materials, suggesting that the materials effectively conveyed the benefits of data sharing.
General Acceptance of Model:
•77% (3535/4616) of participants  would prefer a one-page consent with supplementary online material to a traditional, multi-page consent.
•This approach may be acceptable for other types of low-risk studies.
Future Directions:
•All materials are publicly available at www.clinicalgenome.org/share in English, Spanish, French, and Mandarin Chinese.
•ClinGen is actively looking for clinic and/or laboratory partners to pilot the use of these materials – visit the website for more information.
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