Guidelines on confidentiality for population-based cancer registration

European Journal of Cancer Prevention

Volumn 14, Issue 4, 2005, Pages 309-327

  Storm, Hans ^a   Brewster, David ^b   Coleman, Michel ^c   Deapen, Dennis ^d   Oshima, Akira ^e   Threlfall, Tim ^f  

^a DANISH CANCER SOCIETY RESEARCH CENTER   (Denmark)

^b Scottish Cancer Registry   (United Kingdom)

^c LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE   (United Kingdom)

^d Los Angeles Cancer Surveillance Program   (United States)

^e OSAKA MEDICAL COLLEGE   (Japan)

^f Western Australian Birth Defects Registry   (Australia)

Author keywords

[No Author keywords available]

Indexed keywords

CANCER EPIDEMIOLOGY; CANCER REGISTRY; CANCER RESEARCH; CONFIDENTIALITY; ELECTRONIC MEDICAL RECORD; GENETIC COUNSELING; HEALTH CARE PLANNING; HEALTH CARE QUALITY; HEALTH CARE UTILIZATION; HEALTH SURVEY; PRACTICE GUIDELINE; PRIORITY JOURNAL; REVIEW;

CONFIDENTIALITY; FEMALE; HUMANS; INCIDENCE; MALE; NEOPLASMS; REGISTRIES; SENSITIVITY AND SPECIFICITY; SURVIVAL ANALYSIS;

EID: 23344444909     PISSN: 09598278     EISSN: None     Source Type: Journal    
DOI: 10.1097/00008469-200508000-00003     Document Type: Review

References (19)

1. Anderson RJ (1995). Security in clinical information systems. University of Cambridge. (http://www.cl.cam.ac.uk/users/rja14/policy11/policy11.html) and BMA.
2. Anonymous. United Kingdom of Great Britain and Northern Ireland (2002). Privacy and human rights 2002: an international survey of privacy laws and developments, London: EPIC and Privacy International; pp. 375-392.
3. Coleman MP, Evans BG, Barrett G (2003). Confidentiality and the public interest in medical research - will we ever get it right? Clinical Medicine 3:219-228.
4. Coleman MP, Muir CS, Ménégoz F (1992). Confidentiality in the cancer registry. Br J Cancer 66:1138-1149.
5. Cordier LJ (1995). The directive on the protection of individuals with regard to the processing of personal data, and medical and epidemiological research. EU Biomed Health Res Newsletter 5-7.
6. Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 (1995). The protection of individuals with regard to processing of personal data and on the free movement of such data. Official Journal of the European Communities 281(1):31-50.
7. Fritz A, Percy C, Jack A, Shanmugaratnam K, Sobin L, Parkin DM, Whelan S (editors) (2000). International Classification of Diseases for Oncology, Third Edition, World Health Organization, Geneva.
8. IARC/IACR Guidelines on Confidentiality in the Cancer Registry (1992). IARC Internal Report No. 92/003. Lyon: IARC.
9. Jensen OM, Parkin DM, MacLennan R, Muir CS, Skeet RG (editors) (1991). Cancer registration - principles and methods. Lyon: IARC. IARC Scientific Publication No. 95.
10. Lowrance WW (1997). Privacy and health research. A report to the US Secretary of Health and Human Services. Washington, DC: DHHS.
11. Lowrance WW (2002). Learning from experience: privacy and the secondary use of data in health research. London: Nuffield Trust.
12. Medical Research Council (2000). Personal information in medical research. London, Medical Research Council: MRC Ethics Series.
13. Medical Research Council (1985). Responsibility in the use of personal medical information for research: principles and guide to practice. BMJ 290:1120-1124.
14. Muir CS, Démaret E, Boyle P (1985). The cancer registry in cancer control: an overview. In: Parkin DM, Wagner G, Muir CS (editors). The role of the registry in cancer control. Lyon: IARC Scientific Publication No. 66. IARC; pp. 13-26.
15. National Academy Press (1997). For the Record: Protecting Electronic Health Information. Committee on Maintaining Privacy and Security in Health Care Applications of the National Information Infrastructure. National Research Council, Washington, DC: National Academy Press, http://www.nap.edu/ bookstore.
16. Royal College of Physicians Committee on Ethical Issues in Medicine (1999). Research based on archived information and sample. J R Coll Physicians Lond 33:264-266.
17. Storm HH, Clemmensen IH, Black RJ (1998). Survey of cancer registries in the European Union. Lyon: IARC Technical Report No. 28. IARC.
18. Storm H, Buiatti E, Hakulinen T, Ziegler H (2002). ENCR Guidelines on confidentiality in population-based cancer registration in the European Union. Lyon: ENCR.
19. Working Group to the Royal College of Physicians Committee on Ethical Issues in Medicine (1994). Independent ethical review of studies involving personal medical records. J R Coll Physicians Lond 28:439-443.