Participants reported value in both methods of PGx testing. Patient experiences, understanding and result utilization will play an important role in informing future development and implementation of PGx programs.
This practice resource (PR) proposes a hybrid clinical document applicable to every genetic counseling specialty (prenatal, pediatric, cancer, etc.). The practice resource addresses clinical documentation practices for multiple genetic counseling service delivery models including the following in-person, group sessions, and telegenetics (phone and videoconferencing) sessions. The intended audience is U.S.-based genetic counselors given international differences in practice patterns and documentation regulations and requirements.
| ME THODSThis practice resource represents the opinions of a group of Certified Genetic Counselors from a wide range of disciplines (both patient facing and non-patient facing). The opinions of this author group are based on combined clinical and professional experiences as well as reviews of English-language medical articles and other governmental and institutional policies that influence clinical documentation practices. The recommendations in this practice resource are not intended to supersede the legal or institutional guidelines issued by a genetic counselors' employer or the opinions of individual genetic counselors.
Genomic screening programs have potential to benefit individuals who may not be clinically ascertained, but little is known about the psychological impact of receiving genetic results in this setting. The current study sought to further the understanding of individuals’ psychological response to receiving an actionable genetic test result from genomic screening. Telephone surveys were conducted with patient-participants at 6 weeks and 6 months post genetic result disclosure between September 2019 and May 2021 and assessed emotional response to receiving results via the FACToR, PANAS, and decision regret scales. Overall, 354 (29.4%) study participants completed both surveys. Participants reported moderate positive emotions and low levels of negative emotions, uncertainty, privacy concern, and decision regret over time. There were significant decreases in negative emotions (p = 0.0004) and uncertainty (p = 0.0126) between time points on the FACToR scale. “Interested” was the highest scoring discrete emotion (T1 3.6, T2 3.3, scale 0–5) but was significantly lower at 6 months (<0.0001). Coupled with other benefits of genomic screening, these results of modest psychological impact waning over time adds support to clinical utility of population genomic screening programs. However, questions remain regarding how to elicit an emotional response that motivates behavior change without causing psychological harm.
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