Gerber Jennifer E, Geller Gail, Boyce Angie, Maragakis Lisa L, Garibaldi Brian T
Jennifer E. Gerber, PhD, MSc, was a PhD Student and Graduate Research Assistant at the time of the study, Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD. She is now an Epidemiologist, RTI International, Washington, DC. Gail Geller, ScD, MHS, is a Professor, Department of Health, Behavior, and Society and Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health; Professor, Department of Medicine, Johns Hopkins School of Medicine; and Director of Education Initiatives and Core Faculty, Berman Institute of Bioethics, Johns Hopkins University; all in Baltimore, MD. Angie Boyce, PhD, is a Science and Technology Policy Fellow, American Association for the Advancement of Science, Washington, DC. Lisa L. Maragakis, MD, MPH, is an Associate Professor of Medicine and Executive Director, Johns Hopkins Biocontainment Unit; and Brian T. Garibaldi, MD, MEHP, is an Associate Professor of Medicine, Physiology, and Informatics, Division of Pulmonary and Critical Care, and Director, Johns Hopkins Biocontainment Unit; both in the Johns Hopkins School of Medicine, Baltimore, MD. Lisa L. Maragakis is also Senior Director of Infection Prevention, The Johns Hopkins Health System, Baltimore, MD.
Health Secur. 2021 May-Jun;19(3):318-326. doi: 10.1089/hs.2020.0182. Epub 2021 Apr 6.
The impact of host genomics on an individual's susceptibility, immune response, and risk of severe outcomes for a given infectious pathogen is increasingly recognized. As we uncover the links between host genomics and infectious disease, a number of ethical, legal, and social issues need to be considered when using that information in clinical practice or workforce decisions. We conducted a survey of the clinical staff at 10 federally funded Regional Ebola and Other Special Pathogen Treatment Centers to understand their views regarding the ethical, legal, and social issues related to host genomics and the administrative and clinical functions of high-level isolation units. Respondents overwhelmingly agreed that genomics could provide valuable information to identify patients and employees at higher risk for poor outcomes from highly infectious diseases. However, there was considerable disagreement about whether such data should inform the allocation of scarce resources or determine treatment decisions. While most respondents supported a confidential employer-based genomic testing system to inform individual employees about risk, respondents disagreed about whether such information should be used in staffing models. Respondents who thought genomic information would be valuable for patient treatment were more willing to undergo genetic testing for staffing purposes. Most respondents felt they would benefit from additional training to better interpret results from genetic testing. Although this study was completed before the COVID-19 pandemic, the responses provide a baseline assessment of provider attitudes that can inform policy during the current pandemic and in future infectious disease outbreaks.
宿主基因组学对个体针对特定传染性病原体的易感性、免疫反应及严重后果风险的影响日益受到认可。随着我们揭示宿主基因组学与传染病之间的联系，在临床实践或人员配置决策中使用这些信息时，需要考虑一些伦理、法律和社会问题。我们对10个由联邦资助的区域埃博拉和其他特殊病原体治疗中心的临床工作人员进行了一项调查，以了解他们对与宿主基因组学相关的伦理、法律和社会问题以及高级隔离病房的行政和临床功能的看法。绝大多数受访者同意，基因组学可以提供有价值的信息，以识别在高传染性疾病中预后较差风险较高的患者和员工。然而，对于此类数据是否应影响稀缺资源的分配或决定治疗决策，存在相当大的分歧。虽然大多数受访者支持基于雇主的保密基因组检测系统，以便让员工个人了解风险，但对于此类信息是否应在人员配置模型中使用，受访者存在分歧。认为基因组信息对患者治疗有价值的受访者更愿意为人员配置目的接受基因检测。大多数受访者认为，他们将受益于额外的培训，以更好地解读基因检测结果。尽管这项研究是在新冠疫情之前完成的，但这些回答提供了对医疗服务提供者态度的基线评估，可为当前疫情及未来传染病爆发期间的政策提供参考。
