Challenges created by data dissemination and access restrictions when attempting to address community concerns: individual privacy versus public wellbeing

References

• Trumbo CW. Public requests for cancer cluster investigations: a survey of state health departments. Am J Public Health. 2000; 90: 1300–2. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Centers for Disease Control. Guidelines for investigating clusters of health events. MMWR Recomm Rep. 1990;39:1–23.
   Google Scholar
• Kingsley BS, Schmeichel KL, Rubin CH. An update on cancer cluster activities at the Centers for Disease Control and Prevention. Environ Health Perspect. 2007; 115: 165–71. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Edwards A, Elwyn G, Mulley A. Explaining risks: turning numerical data into meaningful pictures. BMJ. 2002; 324: 827–30. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Frewer L. The public and effective risk communication. Toxicol Lett. 2004; 149: 391–7. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Plowfield L, Wheeler EC, Raymond JE. Time, tact, talent, and trust: essential ingredients of effective academic-community partnerships. Nurs Educ Perspect. 2005; 26: 217–20.
   Google Scholar
• Greenberg M, Wartenberg D. Communicating to an alarmed community about cancer clusters: a fifty state survey. J Community Health. 1991; 16: 71–82. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Thun MJ, Sinks T. Understanding cancer clusters. CA Cancer J Clin. 2004; 54: 273–80. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Jardine CG, Hrudey SE. Mixed messages in risk communication. Risk Anal. 1997; 17: 489–98. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Chen Y. Cancer incidence in Fort Chipewyan, Alberta, 1995–2006. Edmonton: Alberta Cancer Board. 2009. [cited 2010 Mar 5]. Available from: http://www.ualberta.ca/~avnish/rls-2009-02-06-fort-chipewyan-study.pdf.
   Google Scholar
• Wartenberg D, Greenberg M. Methodological problems in investigating disease clusters. Sci Total Environ. 1992; 127: 173–85. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Levy AG, Weinstein N, Kidney E, Scheld S, Guarnaccia P. Lay and expert interpretations of cancer cluster evidence. Risk Anal. 2008; 28: 1531–8. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Estey E, Kmetic A, Reading J. Knowledge translation in the context of Aboriginal health. Can J Nurs Res. 2008; 40: 24–39.
   Google Scholar
• Statistics Canada. Disclosure control. Ottawa: Statistics Canada. 2009. [cited 2011 Jun 5]. Available from: http://www.statcan.gc.ca/pub/12-539-x/2009001/control-controle-eng.htm.
   Google Scholar
• Statistics Canada. Data sources and methodology: Disclosure control. Ottawa: Canadian Cancer Registry, Statistics Canada. 2010. [cited 2011 Jun 5]. Available from: http://www.statcan.gc.ca/cgi-bin/imdb/p2SV.pl?Function=getSurvey&SDDS=3207&lang=en&db=imdb&adm=8&dis=2#b7.
   Google Scholar
• Myers J, Frieden TR, Bherwani KM, Henning KJ. Privacy and public health at risk: public health confidentiality in the digital age. Am J Public Health. 2008; 98: 793–801. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Nass SJ, Levit LA, Gostin LOInstitute of Medicine (US) Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule. Beyond the HIPAA privacy rule: enhancing privacy, improving health through research. Washington: The National Academies Press. 2009. 334. p.
   Google Scholar
• Gostin L. Health care information and the protection of personal privacy: ethical and legal considerations. Ann Inter Med. 1997; 127: 683–90.
   Google Scholar
• Statistics Canada. 2006Community Profiles. Aklavik, Northwest Territories (Code6107025) (table). 2006 Community Profiles. 2006 Census. Statistics Canada Catalogue no. 92-594-XWE. Ottawa: Statistics Canada. 2008 [cited 2011 Jun 27]. Available from: http://www12.statcan.gc.ca/census-recensement/2006/dp-pd/prof/92-591/details/Page.cfm?Lang=E&Geo1=CSD&Code1=6107025&Geo2=PR&Code2=61&Data=Count&SearchText=Aklavik&SearchType=Begins&SearchPR=01&B1=All&Custom=.
   Google Scholar
• Goodman KJ, Jacobson K, Veldhuyzen van Zanten S. Helicobacter pylori infection in Canadian and related Arctic Aboriginal populations. Can J Gastroenterol. 2008; 22: 289–95.
   Google Scholar
• Natural Resources Canada. The Atlas of Canada: Northwest Territories. Ottawa: Natural Resources Canada. 2006. [cited 2011 Jun 30]. Available from: http://atlas.nrcan.gc.ca/auth/english/maps/reference/provincesterritories/northwest_territories/referencemap_image_view.
   Google Scholar
• Cheung J, Goodman K, Munday R, Heavner K, Huntington J, Morse J, et al.. Helicobacter pylori infection in Canada's arctic: Searching for the solutions. Can J Gastroenterol. 2008; 22: 912–6.
   Google Scholar
• Sinnema J. Call for help. Edmonton Journal;2008. Feb 09 [cited 2012 Apr 19]. Available from: http://www2.canada.com/edmontonjournal/news/cityplus/story.html?id=ca78b5c6-7214-4896-9946-450b06beec11&p=1.
   Google Scholar
• Cornwall C. Can you catch cancer?. Canada: Reader's Digest Canada. (Canadian); 2010. [cited 2011 Jun 30]. Available from: http://www.readersdigest.ca/health/sickness-prevention/can-you-catch-cancer?id=2.
   Google Scholar
• Cancer in the Northwest Territories, 1990–2000. A descriptive report. Yellowknife: Department of Health and Social Services, Government of the Northwest Territories. 2003. [cited 2011 Nov 29]. Available from: http://www.hlthss.gov.nt.ca/pdf/reports/diseases_and_conditions/2003/english/cancer_in_the_nwt.pdf.
   Google Scholar
• CBC News. High rates of stomach bacteria in Arctic hamlet: study. Yellowknife: CBC News. 2008. [cited 2011 Jun 30]. Available from: http://www.cbc.ca/news/canada/north/story/2008/02/29/nwt-pylori.html.
   Google Scholar
• Wartenberg D, Thompson WD. Privacy versus public health: the impact of current confidentiality rules. Am J Public Health. 2010; 100: 407–12. 10.3402/ijch.v71i0.18414.
   Google Scholar
• McComas KA, Trumbo CW, Besley JC. Public meetings about suspected cancer clusters: the impact of voice, interactional justice, and risk perception on attendees’ attitudes in six communities. J Health Commun. 2007; 12: 527–49. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Siegrist M, Cvetkovich GT, Gutscher H. Shared values, social trust, and the perception of geographic cancer clusters. Risk Anal. 2001; 21: 1047–53. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Morgan MG, Fischoff B, Bostrom A, Lave L, Atman CJ. Communicating risk to the public. Environ Sci Technol. 1992; 26: 2048–56. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Christopher S, Watts V, McCormick AK, Young S. Building and maintaining trust in a community-based participatory research partnership. Am J Public Health. 2008; 98: 1398–406. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Bowen S, Martens P. Demystifying knowledge translation: learning from the community. J Health Serv Res Policy. 2005; 10: 203–11. 10.3402/ijch.v71i0.18414.
   Google Scholar
• Bayer R, Fairchild A. The limits of privacy: surveillance and the control of disease. Health Care Anal. 2002; 10: 19–35. 10.3402/ijch.v71i0.18414.
   Google Scholar