Edwards J G, Young S R, Brooks K A, Aiken J H, Patterson E D, Pritchett S T
Department of Obstetrics and Gynecology, University of South Carolina School of Medicine, Columbia 29203, USA.
Genet Test. 1998;2(1):37-41. doi: 10.1089/gte.1998.2.37.
The availability of presymptomatic and predisposition genetic testing has spawned the need for legislation prohibiting health insurance discrimination on the basis of genetic information. The federal effort, the Health Insurance Portability and Accountability Act (HIPAA) of 1996, falls short by protecting only those who access insurance through group plans. A committee of University of South Carolina professionals convened in 1996 to develop legislation in support of genetic privacy for the state of South Carolina. The legislation prevents health insurance companies from denying coverage or setting insurance rates on the basis of genetic information. It also protects the privacy of genetic information and prohibits performance of genetic tests without specific informed consent. In preparing the bill, genetic privacy laws from other states were reviewed, and a modified version of the Virginia law adopted. The South Carolina Committee for the Protection of Genetic Privacy version went a step further by including enforcement language and excluding Virginia's sunset clause. The definition of genetic information encompassed genetic test results, and importantly, includes family history of genetic disease. Our experience in navigating through the state legislature and working through opposition from the health insurance lobby is detailed herein.
症状前和易感性基因检测的出现引发了对立法禁止基于基因信息进行健康保险歧视的需求。联邦层面的举措，即1996年的《健康保险流通与责任法案》（HIPAA），存在不足，因为它仅保护那些通过团体保险计划获得保险的人。1996年，南卡罗来纳大学的一个专业委员会召开会议，为南卡罗来纳州制定支持基因隐私的立法。该立法禁止健康保险公司基于基因信息拒绝承保或设定保险费率。它还保护基因信息的隐私，并禁止在没有特定知情同意的情况下进行基因检测。在起草该法案时，对其他州的基因隐私法进行了审查，并采用了弗吉尼亚州法律的修订版。南卡罗来纳州基因隐私保护委员会的版本更进一步，纳入了执行条款并排除了弗吉尼亚州的日落条款。基因信息的定义涵盖基因检测结果，重要的是，还包括遗传疾病家族史。本文详细介绍了我们在州立法机构中推进该法案并应对来自健康保险游说团体的反对意见的经历。
