Musings on privacy issues in health research involving disaggregate geographic data about individuals

International Journal of Health Geographics

Volumn 8, Issue 1, 2009, Pages

  Kamel Boulos, Maged N ^a   Curtis, Andrew J ^b   AbdelMalik, Philip ^a  

^a UNIVERSITY OF PLYMOUTH   (United Kingdom)

^b UNIVERSITY OF SOUTHERN CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

COMPUTER SECURITY; CONFIDENTIALITY; DEMOGRAPHY; HUMAN; MEDICAL RESEARCH; PRIVACY; REVIEW; STANDARD;

BIOMEDICAL RESEARCH; COMPUTER SECURITY; CONFIDENTIALITY; DEMOGRAPHY; HUMANS; PRIVACY;

EID: 68349094975     PISSN: None     EISSN: 1476072X     Source Type: Journal    
DOI: 10.1186/1476-072X-8-46     Document Type: Editorial

References (52)

1. US CDC Public Health Law 101 Foundational Course for Public Health Practitioners - Unit 6: Privacy and Confidentiality http://www2a.cdc.gov/ phlp/phl101/docs/PHL101-Unit%206%20-%2016Jan09-Secure.ppt
2. Ware W Lessons for the future: Privacy dimensions of medical record keeping Proceedings of the Conference on Health Records: Social Needs and Personal Privacy, Sponsored by the Department of Health and Human Services Task Force on Privacy, Office of the Assistant Secretary for Planning and Evaluation and the Agency for HealthCare Privacy and Research: 11-12 February 1993 (Document No. PB94-168192) Washington, DC: US Government Printing Office 1993:43-51.
3. Anderson R The devil is in the detail-A case in Finland on the privacy of medical records puts two major NHS systems in legal peril (Smart Healthcare - 1 April 2009) http://www.smarthealthcare.com/ anderson-database-01apr09
4. Anderson R Brown I Dowty T Inglesant P Heath W Sasse A Database State York, England: The Joseph Rowntree Reform Trust Ltd 2009. http://www.jrrt.org.uk/uploads/Database%20State.pdf
5. Secondary Uses Service (SUS) - NHS Connecting for Health http://www.connectingforhealth.nhs.uk/systemsandservices/sus
6. Malheiros M Medical data secondary use issues (Privacy Value Networks - 10 June 2009) http://www.pvnets.org/2009/06/ medical-data-secondary-use-issues/
7. Pension details of 109,000 stolen (BBC News - 28 May 2009) http://news.bbc.co.uk/1/hi/business/8072524.stm
8. ElcomSoft Distributed Password Recovery Software: High-performance distributed password recovery with NVIDIA GPU acceleration http://www.elcomsoft.com/edpr.html
9. Kamel Boulos MN Descriptive review of geographic mapping of severe acute respiratory syndrome (SARS) on the Internet Int J Health Geogr 2004, 3:2. 343293 14748926 10.1186/1476-072X-3-2
10. Woo RB Epidemics, Privacy Rights and Public Concerns: The Hong Kong SARS Experience Workshop: Globalisation and New Epidemics: Ethics, Security and Policy Making, Organised by European Commission - Science and Society: 22-23 May 2006; Brussels, Belgium http://www.pcpd.org.hk/ english/files/infocentre/speech_20060522.pdf
11. Curtis AJ Mills JW Leitner M Spatial confidentiality and GIS: re-engineering mortality locations from published maps about Hurricane Katrina Int J Health Geogr 2006, 5:44. 1626452 17032448 10.1186/ 1476-072X-5-44
12. Brownstein JS Cassa CA Kohane IS Mandl KD An unsupervised classification method for inferring original case locations from low-resolution disease maps Int J Health Geogr 2006, 5:56. 1702538 17156451 10.1186/ 1476-072X-5-56
13. Cassa CA Wieland SC Mandl KD Re-identification of home addresses from spatial locations anonymized by Gaussian skew Int J Health Geogr 2008, 7:45. 2526988 18700031 10.1186/1476-072X-7-45
14. Van Wey LK Rindfuss RR Gutmann MP Entwisle B Balk DL Confidentiality and spatially explicit data: concerns and challenges Proc Natl Acad Sci USA 2005, 102(43):15337-15342. 1266143 16230608 10.1073/pnas.0507804102
15. Gutmann M Witkowski K Colyer C O'Rourke JM McNally J Providing Spatial Data for Secondary Analysis: Issues and Current Practices relating to Confidentiality Popul Res Policy Rev 2008, 27(6):639-665. 2600804 19122860 10.1007/s11113-008-9095-4
16. Werneck GL Georeferenced data in epidemiologic research Cien Saude Colet 2008, 13(6):1753-66. 18833352
17. Cassa CA Privacy and identifiability in clinical research, personalized medicine, and public health surveillance PhD thesis Harvard University-MIT Division of Health Sciences and Technology 2008 http://hdl.handle.net/1721.1/45624
18. Sherman JE Fetters TL Confidentiality concerns with mapping survey data in reproductive health research Stud Fam Plann 2007, 38(4):309-21. 10.1111/j.1728-4465.2007.00143.x 18284045
19. Siffel C Strickland MJ Gardner BR Kirby RS Correa A Role of geographic information systems in birth defects surveillance and research Birth Defects Res A Clin Mol Teratol 2006, 76(11):825-33. 10.1002/bdra.20325 17094141
20. Matthews SA Moudon AV Daniel M Work group II: Using Geographic Information Systems for enhancing research relevant to policy on diet, physical activity, and weight Am J Prev Med 2009, 36(4 Suppl):S171-6. 10.1016/j.amepre.2009.01.011 19285210
21. Smolders R Casteleyn L Joas R Schoeters G Human biomonitoring and the INSPIRE directive: spatial data as link for environment and health research J Toxicol Environ Health B Crit Rev 2008, 11(8):646-59. 18821423
22. Foley R Assessing the applicability of GIS in a health and social care setting: planning services for informal carers in East Sussex, England Soc Sci Med 2002, 55(1):79-96. 10.1016/S0277-9536(01)00208-8 12137191
23. Armstrong MP Rushton G Zimmerman DL Geographically masking health data to preserve confidentiality Stat Med 1999, 18(5):497-525. 10.1002/ (SICI)1097-0258(19990315)18:5<497::AID-SIM45>3.0.CO;2-# 10209808
24. Cassa CA Grannis SJ Overhage JM Mandl KD A context-sensitive approach to anonymizing spatial surveillance data: impact on outbreak detection J Am Med Inform Assoc 2006, 13(2):160-5. 1447544 16357353 10.1197/jamia.M1920
25. Kamel Boulos MN Cai Q Padget JA Rushton G Using software agents to preserve individual health data confidentiality in micro-scale geographical analyses J Biomed Inform 2006, 39(2):160-70. 10.1016/ j.jbi.2005.06.003 16098819
26. Wieland SC Cassa CA Mandl KD Berger B Revealing the spatial distribution of a disease while preserving privacy Proc Natl Acad Sci USA 2008, 105(46):17608-13. 2584758 19015533 10.1073/pnas.0801021105
27. Olson KL Grannis SJ Mandl KD Privacy protection versus cluster detection in spatial epidemiology Am J Public Health 2006, 96(11):2002-8. 1751806 17018828 10.2105/AJPH.2005.069526
28. Ozonoff A Jeffery C Manjourides J White LF Pagano M Effect of spatial resolution on cluster detection: a simulation study Int J Health Geogr 2007, 6:52. 2213641 18042281 10.1186/1476-072X-6-52
29. Snow J On the Mode of Communication of Cholera London, England: John Churchill 2 1855 http://www.ph.ucla.edu/EPI/snow/snowbook.html
30. Onsrud HJ Johnson JP Lopez X Protecting Personal Privacy in Using Geographic Information Systems Photogrammetric Engineering and Remote Sensing 1994, 60(9):1083-1095. http://www.spatial.maine.edu/~onsrud/ tempe/onsrud.html
31. Google Latitude http://www.google.com/latitude
32. Microsoft Vine http://www.vine.net/
33. Yahoo! Fire Eagle http://fireeagle.yahoo.net/
34. Mokbel MF Privacy in Location-Based Services: State-of-the-Art and Research Directions Proceedings of the 8th International Conference on Mobile Data Management (MDM'07): 7-11 May 2007; Mannheim, Germany IEEE 2007:228-228. DOI: 10.1109/MDM.2007.45
35. Kamel Boulos MN Chapter 49: Principles and techniques of interactive Web cartography and Internet GIS Manual of Geographic Information Systems Bethesda, Maryland: ASPRS-American Society for Photogrammetry and Remote Sensing Madden M 2009:935-974. http://www.asprs.org/gis_manual/ index.html ISBN: 1-57083-086-X
36. Microsoft Windows BitLocker Drive Encryption http://technet.microsoft.com/en-us/library/cc766200(WS.10).aspx
37. Securing Sensitive Information with Identity and Access Assurance (RSA/ Courion White Paper) http://www.rsa.com/solutions/IA/wp/ 10292_RSA-Courion_WP_0609.pdf
38. IronKey: Secure USB Flash Drive with Internet Protection Services https://www.ironkey.com/
39. Integral Crypto Drive http://www.integralmemory.com/crypto/?gclid= CMW528i5ipsCFU0B4wod7GSUoA
40. SDelete http://technet.microsoft.com/en-us/sysinternals/bb897443.aspx
41. El Emam K Neri E Jonker E An Evaluation of Personal Health Information Remnants in Second-Hand Personal Computer Disk Drives J Med Internet Res 2007, 9(3):e24. http://www.jmir.org/2007/3/e24 2047285 17942386 10.2196/ jmir.9.3.e24
42. AbdelMalik P Kamel Boulos MN Jones R The perceived impact of location privacy: a web-based survey of public health perspectives and requirements in the UK and Canada BMC Public Health 2008, 8:156. 2396622 18471295 10.1186/1471-2458-8-156
43. GeoPKDD - Geographic Privacy-Aware Knowledge Discovery and Delivery http://www.geopkdd.eu/
44. First Interdisciplinary Workshop on Mobility, Data Mining and Privacy: Preserving anonymity in geographically referenced data: 14 February 2008; Rome, Italy http://wiki.kdubiq.org/mobileDMprivacyWorkshop/
45. HCLS Patient Data Security and Privacy http://esw.w3.org/topic/HCLS/ SecurityPrivacy
46. URISA - The Association for GIS Professionals http://wwww.urisa.org/
47. El Emam K Brown A AbdelMalik P Evaluating Predictors of Geographic Area Population Size Cut-offs to Manage Re-identification Risk J Am Med Inform Assoc 2009, 16:256-266. 10.1197/jamia.M2902 19074299
48. Panel on Confidentiality Issues Arising from the Integration of Remotely Sensed and Self-Identifying Data, National Research Council Putting People on the Map: Protecting Confidentiality with Linked Social-Spatial Data Washington, DC: The National Academies Press 2007.
49. Brownstein JS Cassa CA Mandl KD No place to hide-reverse identification of patients from published maps N Engl J Med 2006, 355(16):1741-2. 10.1056/NEJMc061891 17050904
50. Google Street View http://maps.google.com/help/maps/streetview/
51. Kamel Boulos MN Scotch M Cheung KH Burden D Web GIS in practice VI: a demo playlist of geo-mashups for public health neogeographers Int J Health Geogr 2008, 7:38. 2491600 18638385 10.1186/1476-072X-7-38
52. Tondel M Axelson O Concerns about privacy in research may be exaggerated BMJ 1999, 319(7211):706-7. 1116554 10480838