Development of a consent resource for genomic data sharing in the clinical setting.

ABSTRACT:

Purpose

Data sharing between clinicians, laboratories, and patients is essential for improvements in genomic medicine, but obtaining consent for individual-level data sharing is often hindered by a lack of time and resources. To address this issue, the Clinical Genome Resource (ClinGen) developed tools to facilitate consent, including a one-page consent form and online supplemental video with information on key topics, such as risks and benefits of data sharing.

Methods

To determine whether the consent form and video accurately conveyed key data sharing concepts, we surveyed 5,162 members of the general public. We measured comprehension at baseline, after reading the form and watching the video. Additionally, we assessed participants' attitudes toward genomic data sharing.

SUBMITTER: Riggs ER 

PROVIDER: S-EPMC6292744 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature