Rudolph Abby E, Bazzi Angela Robertson, Fish Sue
Boston University School of Public Health, Department of Epidemiology, 715 Albany Street, T418E, Boston, MA 02118, United States; Pacific Institute for Research and Evaluation, The Calverton Center, 11720 Beltsville Drive Suite 900, Calverton, MD 20705, United States.
Boston University School of Public Health, Department of Community Health Sciences, 801 Massachusetts Avenue Crosstown Center, MA 02118, United States.
Addict Behav. 2016 Oct;61:84-90. doi: 10.1016/j.addbeh.2016.05.014. Epub 2016 May 17.
Analyses with geographic data can be used to identify "hot spots" and "health service deserts", examine associations between proximity to services and their use, and link contextual factors with individual-level data to better understand how environmental factors influence behaviors. Technological advancements in methods for collecting this information can improve the accuracy of contextually-relevant information; however, they have outpaced the development of ethical standards and guidance, particularly for research involving populations engaging in illicit/stigmatized behaviors. Thematic analysis identified ethical considerations for collecting geographic data using different methods and the extent to which these concerns could influence study compliance and data validity.
In-depth interviews with 15 Baltimore residents (6 recruited via flyers and 9 via peer-referral) reporting recent drug use explored comfort with and ethics of three methods for collecting geographic information: (1) surveys collecting self-reported addresses/cross-streets, (2) surveys using web-based maps to find/confirm locations, and (3) geographical momentary assessments (GMA), which collect spatiotemporally referenced behavioral data.
Survey methods for collecting geographic data (i.e., addresses/cross-streets and web-based maps) were generally acceptable; however, participants raised confidentiality concerns regarding exact addresses for illicit/stigmatized behaviors. Concerns specific to GMA included burden of carrying/safeguarding phones and responding to survey prompts, confidentiality, discomfort with being tracked, and noncompliance with study procedures. Overall, many felt that confidentiality concerns could influence the accuracy of location information collected for sensitive behaviors and study compliance.
Concerns raised by participants could result in differential study participation and/or study compliance and questionable accuracy/validity of location data for sensitive behaviors.
利用地理数据进行分析可用于识别“热点地区”和“医疗服务荒漠”，研究与服务设施的距离及其使用情况之间的关联，并将环境因素与个体层面的数据相联系，以更好地理解环境因素如何影响行为。收集此类信息的方法的技术进步能够提高上下文相关信息的准确性；然而，这些进步已超过了伦理标准和指导方针的发展速度，特别是对于涉及从事非法/受污名化行为人群的研究。主题分析确定了使用不同方法收集地理数据时的伦理考量，以及这些问题可能影响研究合规性和数据有效性的程度。
对15名报告近期有吸毒行为的巴尔的摩居民进行了深入访谈（6名通过传单招募，9名通过同伴推荐），探讨了三种收集地理信息方法的舒适度和伦理问题：（1）收集自我报告地址/交叉街道的调查，（2）使用网络地图查找/确认位置的调查，以及（3）地理瞬时评估（GMA），即收集时空参照行为数据。
收集地理数据的调查方法（即地址/交叉街道和网络地图）总体上是可以接受的；然而，参与者对非法/受污名化行为的确切地址提出了保密担忧。GMA特有的担忧包括携带/保护手机以及回应调查提示的负担、保密性、被跟踪的不适感以及不遵守研究程序。总体而言，许多人认为保密担忧可能会影响为敏感行为收集的位置信息的准确性和研究合规性。
参与者提出的担忧可能导致不同的研究参与度和/或研究合规性，以及敏感行为位置数据的准确性/有效性存疑。
