精准医学案例：基因组测序后对隐私和歧视的担忧。
Cases in Precision Medicine: Concerns About Privacy and Discrimination After Genomic Sequencing.
机构信息
Columbia University, New York, New York (D.S.).
Columbia University and New York State Psychiatric Institute, New York, New York (P.S.A.).
出版信息
Ann Intern Med. 2019 May 21;170(10):717-721. doi: 10.7326/M18-2666. Epub 2019 May 7.
Abstract
Patients and research participants have indicated that privacy of their genetic test results is an important concern, particularly with respect to insurance coverage. Internists and other physicians whose patients ask about legal protections for information generated by genome sequencing for clinical purposes can provide both reassurance and caution. Protections for medical information in general, as well as laws in some states that provide additional safeguards for genetic data, should reassure patients that this information will remain private. Patients themselves will need to weigh the risks versus the benefits of generating genomic data in deciding whether to undergo exome sequencing.
摘要
患者和研究参与者表示，他们非常关注基因检测结果的隐私问题，尤其是涉及到保险覆盖范围的情况。对于那些患者询问有关基因组测序产生的信息的法律保护的内科医生和其他医生来说，他们既可以提供保证，也可以提供警示。一般来说，对医疗信息的保护，以及一些州为保护遗传数据而提供的额外保障法律，都应让患者相信这些信息将保持隐私。在决定是否进行外显子组测序时，患者自己需要权衡生成基因组数据的风险与收益。
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