Ethics, big data and computing in epidemiology and public health

被引:44
|
作者
Salerno, Jennifer [1 ]
Knoppers, Bartha M. [2 ]
Lee, Lisa M. [3 ]
Hlaing, WayWay M. [4 ]
Goodman, Kenneth W. [5 ]
机构
[1] McMaster Univ, Natl Collaborating Ctr Methods & Tools, McMaster Innovat Pk,Suite 210A,175 Longwood Rd S, Hamilton, ON L8P 0A1, Canada
[2] McGill Univ, Fac Med, Dept Human Genet, Ctr Genom & Policy, Montreal, PQ, Canada
[3] Presidential Commiss Study Bioeth Issues, Washington, DC USA
[4] Univ Miami, Dept Publ Hlth Sci, Div Epidemiol & Populat Sci, Miami, FL USA
[5] Univ Miami, Inst Bioeth & Hlth Policy, Miller Sch Med, Miami, FL USA
关键词
Epidemiology; Ethics; Big data; Public health; Genomics research;
D O I
10.1016/j.annepidem.2017.05.002
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Purpose: This article reflects on the activities of the Ethics Committee of the American College of Epidemiology (ACE). Members of the Ethics Committee identified an opportunity to elaborate on knowledge gained since the inception of the original Ethics Guidelines published by the ACE Ethics and Standards of Practice Committee in 2000. Methods: The ACE Ethics Committee presented a symposium session at the 2016 Epidemiology Congress of the Americas in Miami on the evolving complexities of ethics and epidemiology as it pertains to "big data." This article presents a summary and further discussion of that symposium session. Results: Three topic areas were presented: the policy implications of big data and computing, the fallacy of "secondary" data sources, and the duty of citizens to contribute to big data. A balanced perspective is needed that provides safeguards for individuals but also furthers research to improve population health. Our in-depth review offers next steps for teaching of ethics and epidemiology, as well as for epidemiological research, public health practice, and health policy. Conclusions: To address contemporary topics in the area of ethics and epidemiology, the Ethics Committee hosted a symposium session on the timely topic of big data. Technological advancements in clinical medicine and genetic epidemiology research coupled with rapid advancements in data networks, storage, and computation at a lower cost are resulting in the growth of huge data repositories. Big data increases concerns about data integrity; informed consent; protection of individual privacy, confidentiality, and harm; data reidentification; and the reporting of faulty inferences. (C) 2017 Elsevier Inc. All rights reserved.
引用
收藏
页码:297 / 301
页数:5
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