The article focuses on the motivation for and the impact of HCM genetic testing on family members. The 32 participants in the study all encouraged family members to undergo genetic testing with the hope that the knowledge gained would benefit family members down the line. However, the study found that the psychological impact of a positive result, in the absence of overt disease, was highly variable. Some gene positive individuals perceived that they had an absolute risk of developing HCM, with substantial detriment to their lifestyle choices, while others were not at all affected by the result and made no lifestyle changes.
A recent study published in the American Heart Association’s Circulation found that a majority of individuals who have a Sudden Arrhythmia Death Syndrome (SADS) diagnosis and/or relatives applying for various types of insurance (such as health, life, travel, and disability) were denied coverage. The preexisting SADS diagnosis was the predominant reason given for denial.
Though HCM does not generally fall under the SADS umbrella, these findings are equally concerning for HCM families.
SADS conditions generally include:
- Brugada Syndrome
- Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)
- Long QT Syndrome (LQTS)
- Short QT Syndrome (SQTS)
- Timothy Syndrome
- Wolff Parkinson White (WPW)
For more information on these conditions, visit the SADS Foundation.