Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice

被引：19
|
作者：
Clark, Karin [1 ]
Duckham, Matt [2 ,3 ]
Guillemin, Marilys [4 ,5 ]
Hunter, Assunta [6 ]
McVernon, Jodie [7 ,8 ]
O'Keefe, Christine [9 ]
Pitkin, Cathy [10 ]
Prawer, Steven [11 ]
Sinnott, Richard [12 ]
Warr, Deborah [13 ]
Waycott, Jenny [14 ]
机构：
[1] Melbourne Law Sch, Grattan St, Melbourne, Vic 3010, Australia
[2] RMIT Univ, Sch Math & Geospatial Sci, Melbourne, Vic, Australia
[3] RMIT Univ, Dept Geospatial Sci, City Campus,124 La Trobe St, Melbourne, Vic 3000, Australia
[4] Univ Melbourne, Fac Med Dent & Hlth Sci, Melbourne, Vic, Australia
[5] Melbourne Sch Populat & Global Hlth, Ctr Hlth Equ, Level 2,Alan Gilbert Bldg,161 Barry St, Parkville, Vic 3010, Australia
[6] Melbourne Sch Populat & Global Hlth, 5-207 Bouverie St, Carlton, Vic 3053, Australia
[7] Royal Melbourne Hosp, Peter Doherty Inst Infect & Immun, 792 Elizabeth St, Melbourne, Vic 3000, Australia
[8] Melbourne Sch Populat & Global Hlth, Modelling & Simulat Grp, Ctr Epidemiol & Biostat, 792 Elizabeth St, Melbourne, Vic 3000, Australia
[9] CSIRO, CSIRO Math Informat & Stat, GPO Box 664, Acton, ACT 2601, Australia
[10] CSIRO, Social Responsibil & Eth, GPO Box 664, Acton, ACT 2601, Australia
[11] iBIONICS, F3006,283 Boul Alexandre Tache, Gatineau, PQ J9A 1L8, Canada
[12] Univ Melbourne, Comp & Informat Syst Dept, Level 03 Room 322,Doug Mcdonell Bldg, Melbourne, Vic 3010, Australia
[13] Univ Melbourne, Melbourne Sch Populat & Global Hlth, Ctr Hlth Equ, McCaughey Ctr, 5-207 Bouverie St, Carlton, Vic 3053, Australia
[14] Univ Melbourne, Dept Comp & Informat Syst, Level 09 Room 15,Doug Mcdonell Bldg, Melbourne, Vic 3010, Australia
来源：
ETHICS AND INFORMATION TECHNOLOGY | 2019年 / 21卷 / 01期
关键词：
Bioethics; Internet research; Digital data; Data security; Data sharing; Privacy/confidentiality; Research ethics committees; Institutional review boards; HEALTH DATA; INTERNET RESEARCH; PRIVACY; ONLINE; CONFIDENTIALITY; DEPRESSION; PROTECTION; QUESTIONS; PROGRAMS; ISSUES;
D O I：
10.1007/s10676-018-9490-4
中图分类号：
B82 [伦理学（道德学）];
学科分类号：
摘要：
The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed the development of guidelines orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education.
引用
收藏
页码：59 / 73
页数：15
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