Schairer Cynthia E, Mehta Sanjay R, Vinterbo Staal A, Hoenigl Martin, Kalichman Michael, Little Susan J
a Department of Psychiatry, University of California San Diego , La Jolla , California , USA.
b Department of Medicine, University of California San Diego , La Jolla , California , USA.
AJOB Empir Bioeth. 2019 Jul-Sep;10(3):201-213. doi: 10.1080/23294515.2019.1601648. Epub 2019 May 3.
Molecular epidemiology (ME) is a technique used to study the dynamics of pathogen transmission through a population. When used to study HIV infections, ME generates powerful information about how HIV is transmitted, including epidemiologic patterns of linkage and, potentially, transmission direction. Thus, ME raises challenging questions about the most responsible way to protect individual privacy while acquiring and using these data to advance public health and inform HIV intervention strategies. Here, we report on stakeholders' expectations for how researchers and public health agencies might use HIV ME. We conducted in-depth semistructured interviews with 40 key stakeholders to find out how these individuals respond to the proposed risks and benefits of HIV ME. Transcripts were coded and analyzed using Atlas.ti. Expectations were assessed through analysis of responses to hypothetical scenarios designed to help interviewees think through the implications of this emerging technique in the contexts of research and public health. Our analysis reveals a wide range of imagined responsibilities, capabilities, and trustworthiness of researchers and public health agencies. Specifically, many respondents expect researchers and public health agencies to use HIV ME carefully and maintain transparency about how data will be used. Informed consent was discussed as an important opportunity for notification of privacy risks. Furthermore, some respondents wished that public health agencies were held to the same form of oversight and accountability represented by informed consent in research. To prevent HIV ME from becoming a barrier to testing or a source of public mistrust, the sense of vulnerability expressed by some respondents must be addressed. In research, informed consent is an obvious opportunity for this. Without giving specimen donors a similar opportunity to opt out, public health agencies may find it difficult to adopt HIV ME without deterring testing and treatment.
分子流行病学（ME）是一种用于研究病原体在人群中传播动态的技术。当用于研究HIV感染时，分子流行病学能产生有关HIV传播方式的有力信息，包括关联的流行病学模式以及潜在的传播方向。因此，分子流行病学提出了一些具有挑战性的问题，即在获取和使用这些数据以促进公共卫生并为HIV干预策略提供信息的同时，如何以最负责任的方式保护个人隐私。在此，我们报告利益相关者对研究人员和公共卫生机构如何使用HIV分子流行病学的期望。我们对40名关键利益相关者进行了深入的半结构化访谈，以了解这些人对HIV分子流行病学所带来的潜在风险和益处的反应。访谈记录使用Atlas.ti软件进行编码和分析。通过分析对假设情景的回答来评估期望，这些假设情景旨在帮助受访者思考这项新兴技术在研究和公共卫生背景下的影响。我们的分析揭示了研究人员和公共卫生机构在想象中的广泛责任、能力和可信度。具体而言，许多受访者期望研究人员和公共卫生机构谨慎使用HIV分子流行病学，并在数据使用方式上保持透明。知情同意被视为告知隐私风险的重要契机。此外，一些受访者希望公共卫生机构能接受与研究中知情同意所代表的相同形式的监督和问责。为防止HIV分子流行病学成为检测的障碍或公众不信任的来源，必须解决一些受访者所表达的脆弱感。在研究中，知情同意显然是解决这一问题的契机。如果不给样本捐赠者类似的退出机会，公共卫生机构可能会发现难以采用HIV分子流行病学，同时又不会阻碍检测和治疗。
