Fear of health insurance loss among individuals at risk for Huntington disease.
Fear of health insurance loss among individuals at risk for Huntington disease.
复制标题
DOI：
10.1002/ajmg.a.32422
复制
发表时间：
2008-08-15
影响因子：
2
通讯作者：
Quaid, Kimberly
中科院分区：
文献类型：
--
作者：
Oster, Emily;Dorsey, E. Ray;Bausch, Jan;Shinaman, Aileen;Kayson, Elise;Oakes, David;Shoulson, Ira;Quaid, Kimberly
亨廷顿病是一种遗传性的最终致命的神经退行性疾病，尽管广泛可用，但基因检测并不常见。影响决定进行测试的因素在很大程度上是未知的。我们对北美1001名有亨廷顿病风险且在入组前未进行基因检测的个体进行了一项前瞻性纵向观察研究。我们评估了在基线时不进行测试的理由，确定了最终进行测试的人的关注点，并评估了人群的心理属性。我们对比了那些接受和不接受测试的人的反应，以及美国和加拿大居民的反应。不进行测试的主要原因是对风险和不确定性感到安心，以及无法“撤销”已获得的知识。入组后，83人（8.3%）进行了基因检测。他们最担心的是失去健康保险，41.6%的人[相比之下，不进行检测的人占6.7%；P<0.001]报告自费进行检测或其他医疗服务，以向保险公司/雇主隐瞒其遗传风险。在接受检测的个体中，美国居民[46.1%]多于加拿大居民[0.0%]；（P=0.02）为医疗服务或基因检测自掏腰包。接受和不接受测试的人的心理属性是相似的。有亨廷顿病风险的人进行基因检测，担心失去医疗保险，许多人自掏腰包支付医疗服务。减轻对医疗保险损失的恐惧可能会帮助那些想要为许多其他疾病进行基因检测的人。
Genetic testing in Huntington disease, an inherited ultimately fatal neurodegenerative disorder, is infrequent despite wide availability. Factors influencing the decision to pursue testing are largely unknown. We conducted a prospective longitudinal observational study of 1001 individuals in North America who were at risk for Huntington disease who had not pursued genetic testing prior to enrollment. We evaluated the rationale for remaining untested at baseline, determined the concerns of those who eventually pursued testing, and assessed the population’s psychological attributes. We contrasted responses between those who did and did not pursue testing, and between United States and Canadian residents. The principal reasons for remaining untested were comfort with risk and uncertainty and the inability to “undo” knowledge gained. After enrollment, 83 individuals [8.3%] pursued genetic testing. Their greatest concern was losing health insurance, and 41.6% of them [vs. 6.7% of those who did not pursue testing; P<0.001] reported paying out of pocket for testing or other medical services to conceal their genetic risk from their insurer/employer. Among individuals who were tested, more United States residents [46.1%] than Canadian residents [0.0%; P=0.02] paid out of pocket for health services or genetic testing. Psychological attributes were similar among individuals who did and did not pursue testing. Individuals at risk for Huntington disease who pursued genetic testing feared losing medical insurance, and many paid out of pocket for medical services. Alleviating the fear of health insurance loss may help those who want to pursue genetic testing for many other conditions.
登录
查看更多内容
影响因子：
3.8
作者：
Alper, J S;Geller, L N;Natowicz, M R
通讯作者：
Natowicz, M R
影响因子：
9.8
作者：
Hall, MA;Rich, SS
通讯作者：
Rich, SS
影响因子：
8.4
作者：
McCleary, RM;Barro, RJ
通讯作者：
Barro, RJ
影响因子：
4.7
作者：
HOLMES, TH;RAHE, RH
通讯作者：
RAHE, RH
DOI：
10.1002/ajmg.1320590117
发表时间：
1995-10-23
期刊：
AMERICAN JOURNAL OF MEDICAL GENETICS
影响因子：
--
作者：
FANOS, JH;JOHNSON, JP
通讯作者：
JOHNSON, JP