Information-Seeking Preferences in Diverse Patients Receiving a Genetic Testing Result in the Clinical Sequencing Evidence-Generating Research (CSER) Study

Authors

Anne Slavotinek
Hannah Prasad
Simon Outram
Sarah Scollon
Shannon Rego
Tiffany Yip
Hannah Hoban
Kate M Foreman
Whitley Kelley
Candice Finnila
Jonathan Berg
Priyanka Murali
Katherine E Bonini
Lisa J Martin
Adam Hott

Language

English

Publication Date

9-1-2023

Journal

Genetics in Medicine

DOI

10.1016/j.gim.2023.100899

PMID

37212252

PMCID

PMC10524447

PubMedCentral® Posted Date

9-1-2024

PubMedCentral® Full Text Version

Author MSS

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 internet was also highly utilized and ranked. Study participants rated some information sources as more useful for positive results compared with inconclusive or negative outcomes, emphasizing that it may be difficult to identify helpful information for individuals receiving an uncertain or negative result. There were few data from non-English speakers, highlighting the need to develop strategies to reach this population.

Conclusion: Our study emphasizes the need for clinicians to provide accurate and comprehensible information to individuals from diverse populations after genetic testing.

Keywords

Humans, Information Seeking Behavior, Genetic Testing, Population Groups, Uncertainty, Family, Information-seeking preferences, genetic testing, diverse populations, exome sequencing, genome sequencing

Published Open-Access

yes

Recommended Citation

Slavotinek, Anne; Prasad, Hannah; Outram, Simon; et al., "Information-Seeking Preferences in Diverse Patients Receiving a Genetic Testing Result in the Clinical Sequencing Evidence-Generating Research (CSER) Study" (2023). Faculty and Staff Publications. 5197.
https://digitalcommons.library.tmc.edu/baylor_docs/5197