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Acceptability and Familiarity of Genetic Treatment Technologies

其他書名	A Survey of Individuals with Sudden Arrhythmia Death Syndrome (SADS) Conditions
出版	Ohio State University, 2019
URL	http://books.google.com.hk/books?id=sEOfzQEACAAJ&hl=&source=gbs_api

註釋Background: Sudden arrhythmia death syndrome (SADS) conditions, including ion channelopathies and cardiomyopathies, are genetic conditions that cause sudden cardiac death (SCD). Genetic testing in SADS conditions is imperative as there is a significant amount of phenotypic variability in these conditions. Current management options, including medications and implantable cardioverter defibrillators (ICDs), do not effectively treat all SADS conditions and may even have significant negative psychosocial implications. Genetic treatment technologies, such as gene therapy and gene editing, may be utilized in the future as a treatment option in the care of individuals with SADS conditions. No studies have been done to assess the SADS community's familiarity with and likelihood to utilize genetic treatment technologies as a treatment option. Methods: Members of the SADS Foundation email directory with a personal or family history of a SADS condition were available to participate in a cross-sectional online survey. The survey focused on the familiarity of and likelihood to utilize ICDs, gene therapy, medications, and gene editing. To explore the factors that influence the likelihood of utilizing the various treatment options, state and trait anxiety, genetic knowledge, and perceived risks were measured. Results: A total of 109 completed surveys were obtained from individuals with a personal diagnosis of a SADS condition and individuals with a family member with a SADS condition. A majority of participants reported being familiar with ICDs (n=102, 93.6%) and medications (n=97, 89%), but unfamiliar with gene therapy (n=81, 74.3%) and gene editing (n=89, 81.7%) as a treatment option for SADS conditions. A majority of individuals reported being likely to utilize ICDs (n=86, 78.9%), medications (n=99, 90.8%), and gene editing (n=65, 59.6%), while fewer were likely to utilize gene therapy (n=55, 50.5%). Participants who were unfamiliar with gene therapy were unlikely to utilize gene therapy (X2=11.91, p=0.001), but likelihood to utilize other treatments did not vary by familiarity. Levels of genetic knowledge, anxiety, and perceived risks did not influence the likelihood to utilize all treatment options. Conclusion: Less than one third of individuals with a personal or family history of SADS conditions were familiar with genetic treatment technologies but more than half were still likely to utilize gene editing. While individuals who are more familiar with a treatment option may be more likely to utilize that option in clinical care, we only observed this relationship with gene therapy. Levels of genetic knowledge, anxiety, and perceived risks did not influence the likelihood of utilizing all treatment options and additional factors should be explored in future research.