Information-seeking preferences in diverse patients receiving a genetic testing result in the Clinical Sequencing Evidence-Generating Research (CSER) study.

ABSTRACT:

Purpose

Accurate and understandable information after genetic testing is critical for patients, family members, and professionals alike.

Methods

As part of a cross-site study from the Clinical Sequencing Evidence-Generating Research consortium, we investigated the information-seeking practices among patients and family members at 5 to 7 months after genetic testing results disclosure, assessing the perceived utility of a variety of information sources, such as family and friends, health care providers, support groups, and the internet.

Results

We found that individuals placed a high value on information obtained from genetics professionals and health care workers, independent of genetic testing result case classifications as positive, inconclusive, or negative. The in

SUBMITTER: Slavotinek A 

PROVIDER: S-EPMC10524447 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature