Community attitudes to the collection and use of identifiable data for health research - Is it an invasion of privacy?

Australian and New Zealand Journal of Public Health

Volumn 31, Issue 4, 2007, Pages 313-317

  Molster, Caron ^a   Bower, Carol ^b,c   O'Leary, Peter ^a,d,e  

^a DEPARTMENT OF HEALTH   (Australia)

^b UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

^c KING EDWARD MEMORIAL HOSPITAL   (Australia)

^d UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

^e CURTIN UNIVERSITY   (Australia)

Author keywords

Birth defects; Community survey; Data collection; Privacy of data; Registry; Research ethics

Indexed keywords

ADULT; AGED; ARTICLE; AUSTRALIA; CONFIDENTIALITY; CONTROLLED STUDY; DISEASE REGISTRY; FEMALE; HUMAN; INFORMATION PROCESSING; INTERVIEW; MALE; MEDICAL INFORMATION; MEDICAL RESEARCH; PREVALENCE; PRIVACY; TELEPHONE;

ATTITUDE; BIOMEDICAL RESEARCH; CROSS-SECTIONAL STUDIES; HUMANS; INTERVIEWS; PRIVACY; WESTERN AUSTRALIA;

EID: 34548092387     PISSN: 13260200     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1753-6405.2007.00077.x     Document Type: Article

References (31)

1. Canadian Institutes of Health Research [homepage on the Internet]. Selected International Legal Norms on the Protection of Personal Information in Health Research. Ottawa (CAN): CIHR; 2001 [cited 2007 Jan 5]. Available from: http://www.cihr-irsc.gc.ca/c/documents/ protection_pi_e.pdf
2. National Health Privacy Working Group of the Australian Health Ministers' Advisory Council [publication page on the Internet]. Draft National Health Privacy Code. Canberra (AUST): Department of Health and Ageing, Australian Government; 2003 [cited 2007 Jan 10]. Available from: http://pandora.nla.gov.au/pan/44612/20060314/www7.health.gov.au/ pubs/nhpcode.htm
3. Australian Law Reform Commission [publications page on the Internet]. Review of Privacy, Issues Paper 31. Canberra (AUST): Australian Government; 2000 [cited 2007 Jan 5]. Available from: http://www.austlii.edu.au/au/other/alrc/publications/issues/31/
4. National Health and Medical Research Council [publications page on the Internet]. Submission to the Office of the Privacy Commissioner Review of the Private Sector Provisions of the Privacy Act 1998. Canberra (AUST): NHMRC; 2004 [cited 2007 Jan 10]. Available from: http://www.nhmrc.gov.au/publications/_files/psp.pdf
5. Office of die Privacy Commissioner [homepage on the Internet]. Getting in on the Act: The Review ofthe Private Sector Provisions of the Privacy Act 1988. Canberra (AUST): 2005 [cited 2007 Jan 5]. Available from: http://www.privacy.gov.au/ACT/review/revreport.pdf
6. O'Grady KF, Nolan TM. Privacy: bad for your health? Med J Aust. 2004;180(6):307-8.
7. Strobl J, Cave E, Walley T. Data protection legislation: Interpretation and barriers to research. Br Med J. 2000;321:890-2.
8. Verity C, Nicoll A. Consent, confidentiality and the threat to public health surveillance. Br Med J. 2002;324:1210-3.
9. Walley T. Using personal information in medical research. Br Med J. 2006;332:130-1.
10. Barrett G, Cassell, JA, Peacock JL, Coleman MP. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. Br Med J. 2006;332(7549):1068-72.
11. Bower C, Rudy E, Ryan A, Cosgrove P. Report ofthe Birth Defects Registry of Western Australia 1980-2004. Perth (AUST): Women's and Children's Health Service; 2005. Report No.: 12.
12. Bower C, Silva D, Henderson TR, Ryan A, et al. Ascertainment of birth defects: the effect on completeness of adding a new source of data. J Poediatr Child Health. 2000;36:574-76.
13. Bower C, Ryan A, Rudy E. Ascertainment of pregnancies terminated because of birth defects: effect on completeness of adding a new source of data. Teratology. 2001;63:23-5. Erratum in: Teratology. 2001;63:164.
14. Higgins J. The Patient Information Advisory Group and the use of patient-identifiable data. J Health Serv Res Policy. 2003;8 Suppl 1: 1-11.
15. Peto J, Fletcher O, Gilham C. Data protection, informed consent and research. Br Med J. 2004;328:1029-30
16. The Academy of Medical Sciences [homepage on the Internet]. Personal Data and Public Good: Using Health Information in Medical Research. Report of the Academy of Medical Sciences. London (UK): The Academy; 2006 [cited 2007 Jan 5]. Available from: http://www.acmedsci.ac.uk/ p48prid5.html
17. Cayton H, Denegri S. Is what's mine my own? J Heahh Serv Res Policy. 2003;8 Suppl 1:33-5.
18. Willison DJ. Trends in collection, use and disclosure of personal information in contemporary health research: challenges for research governance. Health Law Review. 2003; 13(2&3):107-13.
19. Saxena N, MacKinnon MP, Watling J, Willison D, et al. Understanding Canadians' Attitudes and Expectations - Citizens' Dialogue on Privacy and the Use of Personal Information for Health Research in Canada. Ottawa (CAN): Canadian Policy Research Networks; 2006 March.
20. The Office of the Federal Privacy Commission [publications page on the Internet]. Privacy and the Community [report]. Sydney (AUST): The Commission; 2001 [cited 2007 Jan 5]. Available from: http://www.privacy.gov.au/publications/rcommunity/index.html
21. The Institute for Health Freedom [health privacy page on the Internet]. Public Attitudes toward Medical Privacy. Washington (DC): IHF; 2000 [cited 2007 Jan 5]. Available from: http://www.forhealthfreedom.org/ Gallupsurvey/IHF-Gallup.pdf
22. National Health and Medical Research Council [publications page on the internet]. The Impact of Privacy Legislation on NHMRC Stakeholders - Comparative Stakeholder Analysis. Canberra (AUST): NHMRC; 2004 [cited 2007 Jan 5]. Available from: http://www.nhmrc.gov.au/publications/_files/ st8.pdf
23. Stanley F. Public good or invasion of privacy? Proceedings of the 25th International Conference of Data Protection and Privacy Commissioners; 2003 September 10-12 [cited 2007 May 4]; Sydney, Australia. Available from: http://www.privacyconference2003.org/ program.asp#fiona.
24. Baker R, Shiels C, Stevenson K, Fraser R, et al. What proportion of patients refuses consent to data collection from their records for research purposes? Br J Gen Pract. 2000;50(457):655-6.
25. Glasson EJ, Wray J. Obtaining consent affects the value of the Western Australian Autism Register. Med J Aust. 2004;181(9):514-15.
26. KcKinney PA, Jones SJ, Parslow W, Davey N, et al. A feasibility study of signed consent for the collection of patient identifiable information for a national paediatric clinical audit database. Br Med J. 2005;330:877.
27. Parkes J, Dolk H, Hill N, Pattenden S. Cerebral palsy in Northern Ireland: 1981-93. Paediatr Perinat Epidemiol. 2001;15:278-86.
28. Busby A, Ritvanen A, Dolk H, Armstrong N, et al. Survey of informed consent for registration of congenital anomalies in Europe. Br Med J. 2001;331:140-1.
29. Williamson OD, Cameron PA, McNeil JJ. Medical registry governance and patient privacy. Med J Aust. 2004;181(3):125-6.
30. Clark A, Blatchford O, Jamieson R, Paterson N, et al. Ensuring the ethics and legality of disease registers: the solution of the Have a Heart Paisley CHD Register. British Journal of Health Care Computing and Information Management. 2003:20(2):44-8.
31. Davey A, Newson A, O'Leary P. Communication of Genetic Information Within Families: The Case for Familial Comity. J Bioethical Inquiry. 2006;3(3):161-6.