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