Wingrove K J, Norris J, Barton P L, Hagerman R
Kaiser Foundation Health Plan, Denver, Colorado, USA.
Am J Med Genet. 1996 Aug 9;64(2):378-81. doi: 10.1002/(SICI)1096-8628(19960809)64:2<378::AID-AJMG29>3.0.CO;2-B.
This study examined the relationship between diagnosis, experience with insurance underwriting, and perceptions of difficulties with insurance in genetically tested families. Discrimination was strictly defined as the misuse of genetic information in underwriting. Forty-eight families received a survey and thirty-nine (81%) responded. No insurance cancellations were reported although many families believed that it happened often. The fear evidenced by the respondents was out of proportion to the experiences and 66% of the families reported moderate to moderate to extreme worry over losing health insurance. Genetic counselors and others involved in caretaking of diagnosed families must expand their roles to assist in providing access to local resources and information concerning insurance issues and other social issues. Addressing medical issues alone will not provide the assistance these families require.
本研究调查了基因检测家庭中诊断结果、保险承保经历与保险困难认知之间的关系。歧视被严格定义为在承保过程中滥用基因信息。48个家庭收到了调查问卷，39个家庭（81%）作出了回应。虽然许多家庭认为保险取消情况经常发生，但并未报告有保险被取消的情况。受访者表现出的担忧与实际经历不符，66%的家庭表示对失去医疗保险存在中度到极度的担忧。基因咨询师和其他参与诊断家庭护理的人员必须扩大其职责，以协助提供有关保险问题和其他社会问题的当地资源及信息。仅解决医疗问题并不能为这些家庭提供所需的帮助。
