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Working with Human Tissues for Translational Cancer Research
Published on: November 26, 2015
"HIPAA隐私规则"对健康研究的影响
1University of Pittsburgh, Graduate School of Public Health, Pittsburgh, Pennsylvania 15261, USA. repro@edc.pitt.edu
JAMA
|November 15, 2007
概括
医疗保险可移植性和问责法案 (HIPAA) 隐私规则使许多科学家的健康研究变得更加困难,增加了成本并造成了延误. 很少有人认为它改善了参与者的隐私.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 流行病学 流行病学
- 公共卫生政策 公共卫生政策
背景情况:
- 事证据表明,健康保险可移植性和问责法案 (HIPAA) 隐私规则影响了美国的健康研究.
- 有关该规则对研究效率和数据访问的影响存在担忧.
研究的目的:
- 调查流行病学家关于他们对HIPAA隐私规则的经验.
- 评估HIPAA隐私规则对健康研究行为的感知影响.
主要方法:
- 一项全国性的基于Web的调查由13个流行病学学会分发.
- 1527名符合条件的专业人士匿名完成了调查,报告了研究延迟,成本,IRB修改,数据访问和感知到的隐私益处.
主要成果:
- 67.8%的受访者认为HIPAA隐私规则使研究变得更加困难 (利克尔特尺度4-5).
- 52.1%的人确定了受该规则影响最大的特定协议.
- 该规则对人类受试者保护的负面影响明显大于积极影响 (P < .001).
结论:
- 人们认为HIPAA隐私规则会对健康研究产生负面影响,增加不确定性,成本和延迟.
- 只有四分之一的临床科学家接受调查认为,该规则增强了参与者的保密性和隐私.
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