#12-Genetic Testing in the General Population: Communication and Understanding

On This Episode We Discuss:

In this episode we explore genetic testing in low risk populations, both in direct-to-consumer and clinical settings. We interview authors on two recent JoGC papers related to topics of communication of health risks, understanding of genetic testing, and informed decision-making. You can find the Journal of Genetic Counseling webpage via onlinelibrary.wiley.com or via the National Society of Genetic Counselors website.

 

Segment 1: An analysis of direct-to-consumer genetic testing portals and their communication of health risk and test limitations

Nicole Lee is an associate professor of communication in the School of Social and Behavioral Sciences at Arizona State University. Her research examines the intersection of science communication, public relations, and digital media. This work has been applied to many contexts including climate change, biodiversity research, wellness products, and direct-to-consumer genetic testing.

x: @lee_nicole

linkedin: https://www.linkedin.com/in/nicoleleepr/

 

In this segment we discuss:

- What motivated the exploration of how direct-to-consumer (DTC) genetic testing companies communicate health risks to consumers.

- Potential impacts on consumers who may misinterpret relative risk when presented without adequate context.

- Importance of genetic counselors in improving interpretation and communication of DTC genetic test results.

- Suggestions for enhancing transparency and clarity in communicating health risks to consumers.

 

Segment 2: Non-Invasive Prenatal Screening: Testing Motivations and Decision Making in the Low-Risk Population

Meagan Choates, MS, CGC is the Assistant Program Director of the University of Texas Genetic Counseling Program and Assistant Professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences at the McGovern Medical School at UTHealth Houston where she practices prenatal genetic counseling. She received a BS in Biochemistry and Genetics with a Minor in Psychology from Texas A&M University in 2014 and an MS in Genetic Counseling from the University of Texas Genetic Counseling Program in 2016. Meagan provides prenatal genetic counseling services at several Houston area clinics, and supervises genetic counseling students while on their prenatal rotation. In addition, she directs and teaches the genetic counseling program's Embryology course and Approaches to Genetic Counseling Research I & II. She co-directs and teaches in the program's Prenatal Genetic Counseling, Psychosocial Issues, and Psychosocial Practicum courses. She additionally oversees the genetic counseling students' Master of Science thesis research process. Her personal research interests include understanding how genetic screening and testing options are discussed, utilized, and interpreted in the clinical setting.

ResearchGate profile: https://www.researchgate.net/profile/Meagan-Choates-2

In this segment we discuss:

- The anecdotal observations that inspired the study, notably that low-risk and high-risk patients shared similar motivations for choosing NIPT.

- That insurance coverage was the second most significant factor influencing the decision to undergo NIPT.

- About 44% of participants were classified as making "uninformed decisions" despite receiving pre-test counseling from a genetic counselor. However, the term “uninformed” used by the MMIC tool can be misleading.

- The challenge of balancing detailed knowledge expectations with patients' ability to make value-consistent and thoughtful decisions.

 

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