Changing care for patients at risk for Huntington’s disease in the United States due to the 21st Century Cures Act
AI Summary
21st Century Cures mandates immediate release of health results, conflicting with HDSA protocol requiring in-person predictive Huntington's disease result disclosure due to suicidality risk.
Two thirds of HDSA centre of excellence professionals reported workflow changes; responses varied and many requested embargoing of predictive HD results.
Participants expressed concern about misinterpretation, suicidality, and survivor guilt, and called for published guidelines to standardise immediate release handling.
The Huntington’s Disease Society of America (HDSA) protocol requires in-person result disclosure for predictive testing due to the increased suicidality risk in the Huntington’s disease (HD) population. The 21st Century Cures Act (Cures), a United States law requiring immediate release of all healthcare test results, contradicts this protocol. There is no published literature exploring how Cures has impacted HDSA centers of excellence (CoE). This study used semi-structured interviews with 15 HDSA CoE healthcare professionals (HCPs) to explore the impact of Cures on the HDSA CoE’s disclosure of predictive HD test results. Interviews were recorded, transcribed, and coded to identify recurring categories via inductive content analysis. Two-thirds of participants reported changes made due to Cures. Three major categories were identified: changes made, changes wished for, and concerns regarding immediate release of predictive HD test results. There was variability among reported workflow changes. The most requested change was embargoing release of HD results due to concerns about patient result misinterpretation, suicidality, and survivor’s guilt. Published guidelines on how to navigate immediate release of HD genetic testing results could provide a standardized approach across HDSA CoE.
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