Disclosure of personal medical information: differences among parents and affected adults for genetic and nongenetic conditions.
Disclosure of personal medical information: differences among parents and affected adults for genetic and nongenetic conditions.
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个人医疗信息的披露：父母和受影响的成年人在遗传和非遗传疾病方面的差异。
DOI：
10.1089/gte.2005.9.269
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发表时间：
2005
期刊：
影响因子：
--
通讯作者：
Natowicz,Marvin
中科院分区：
文献类型：
--
作者：
Johnson,Summer;Kass,NancyE;Natowicz,Marvin
保护医疗信息的机密性一直是生物伦理学、公共政策和法律领域非常感兴趣的问题。很少有实证研究解决了在多种情况下，如健康保险、就业和家庭，病人的经验和态度对私人医疗信息的披露。此外，尚不清楚患有严重疾病的人与孩子患有严重疾病的人在经历和对待隐私的态度上是否存在差异。该研究试图确定受影响的成年人和受影响儿童的父母对医疗隐私和保密的态度和经历是否有所不同。对296名患有镰状细胞病（SCD）、囊性纤维化（CF）或糖尿病（DM）儿童的成人和家长进行了访谈。这项横断面研究收集了他们关于医疗隐私和保密的经历、态度和信念的数据。对定量数据进行多项logistic回归分析。对开放式回答项目的数据进行定性分析。父母向他人透露孩子的诊断比受影响的成年人透露自己的疾病状况更频繁。与受影响的成年人相比，父母不太可能后悔自己披露了自己的病情，不希望其他人发现，不太可能迫于压力分享信息，也不太可能被雇主问及自己的病情。受影响的成年人对披露表达了更大的担忧，更普遍，更害怕歧视，并承受来自家庭成员的更大压力。与这些人群打交道的临床医生和研究人员应该考虑这些隐私和信息披露方面的差异。有必要进行进一步的研究，以检查这些人在保险、就业和社会交往方面的态度和经验差异的含义。
Protecting the confidentiality of medical information has been an issue of great interest in the fields of bioethics, public policy, and law. Few empirical studies have addressed patient experiences and attitudes toward disclosure of private medical information in multiple contexts such as health insurance, employment, and the family. Furthermore, it is unclear whether differences exist in experiences and attitudes about privacy between those living with a serious medical condition versus those who have a child with a medical condition. The study sought to determine whether attitudes and experiences related to medical privacy and confidentiality differ between affected adults and parents of affected children. Interviews were conducted with 296 adults and parents of children with sickle cell disease (SCD), cystic fibrosis (CF), or diabetes mellitus (DM). This cross-sectional study collected data regarding their experiences, attitudes, and beliefs concerning medical privacy and confidentiality. Multinomial logistic regression analysis was conducted on quantitative data. Qualitative analysis was conducted on data from open-ended response items. Parents disclose their child’s diagnosis to others more often than affected adults disclose their own disease status. Parents are less likely than affected adults to regret their disclosure, to hope others do not find out, to have been pressured to share information, and to be asked about their disease by employers. Affected adults express greater concern about disclosure, a greater prevalence and greater fear of discrimination, and experience greater pressure from family members to disclose. Clinicians and researchers working with these populations should consider these differences in privacy and disclosure. Further study is necessary to examine the implications of these differences in attitudes and experiences concerning insurance, employment, and social interactions among persons with these conditions.