Study links heart-related genetic counseling with less worry and greater empowerment
Among 890 adults, self-reported empowerment rose and some measures of worry and fear fell after counseling, before genetic-test results were returned.
Low evidenceHuman studySome caution advised
Medical disclaimer: This article summarizes research findings and is for informational purposes only. It is not medical advice.
Editorial illustration — not from the study.
Participants completed questionnaires about empowerment, worry, cardiac anxiety, and their relationship with the genetic counselor. The follow-up questionnaire was completed before results from genetic tests ordered at the visit were disclosed, allowing the researchers to examine reported changes after counseling separately from the impact of test results.
Average empowerment increased after the visit, while worry and fear on one cardiac-anxiety measure decreased slightly. Changes differed across some groups: worry decreased more among people with less formal education, an arrhythmia-related reason for referral, or an inherited-risk status rather than an established clinical diagnosis. A stronger patient-reported relationship with the counselor was associated with a larger increase in empowerment, but not with the decrease in worry.
The question examined
The researchers conducted a prospective, observational before-and-after study of 890 adults attending their first outpatient cardiovascular genetic-counseling appointment. Participants were seen by genetic counselors at eight medical centers in the United States and Canada and completed validated questionnaires before counseling and up to four weeks afterward, before any genetic-test results ordered during the visit were returned. The study included counseling for cardiomyopathies, arrhythmias or channelopathies, aortopathies, and dyslipidemias. Most appointments were by video, and 75.6% of participants had genetic testing ordered at the appointment.
What the analysis found
After counseling, the average empowerment score increased by 5.94 points, with substantial variation among participants. The average worry score decreased by 0.40 points, and the fear subscale of a cardiac-anxiety questionnaire decreased by 0.034 points. The overall cardiac-anxiety score did not change significantly. Worry decreased more among participants with less formal education, an arrhythmia indication, or an at-risk family-member status. The reported strength of the counselor-patient relationship was strongly associated with greater improvement in empowerment, but it was not associated with the change in worry. These findings are associations and do not demonstrate that counseling caused the changes.
Who this is relevant to
The findings are most directly relevant to adults having a first outpatient cardiovascular genetic-counseling visit in settings similar to the eight participating United States and Canadian centers. They may not represent people who do not attend specialty clinics, people from more diverse ancestry or demographic groups, children, or patients receiving newer counseling models. The study does not establish effects on long-term health or show that the findings apply to every person receiving genetic counseling.
The significance
The study suggests that cardiovascular genetic counseling may be linked with short-term changes in how patients feel empowered and how much worry or cardiac fear they report, independently of receiving genetic-test results. This may help researchers evaluate counseling services and identify which patient-reported outcomes to measure. The study did not show that counseling improved long-term health, changed medical decisions, or produced better clinical outcomes.
Limitations & evidence assessment
Because there was no untreated or comparison group, changes could reflect factors other than counseling, including participation effects or changes over time. The study examined usual care, with no common counseling script or recorded visits, so the content and style of counseling may have differed across centers and counselors. Follow-up lasted only up to four weeks, so the duration of the reported changes and any relationship to genetic-test results are unknown. A modest response rate means some patient experiences may be underrepresented, and small numbers in some center-specific groups reduced the ability to account fully for differences between centers. Participants were drawn from established clinics, and the sample was predominantly White, limiting representativeness. The excerpt also reports financial or professional relationships for some authors.
Why this evidence level: This was a relatively large human study, but it used an observational before-and-after design without a comparison group. The results show associations and short-term changes, not that genetic counseling caused the outcomes.
Evidence levels are editorial estimates derived from study metadata — they are not clinical appraisals.
// Source
Circulation Genomic and Precision Medicine · 2026 · DOI: 10.1161/circgen.125.005514
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