Public opinions about participating in health research

Canadian Journal of Public Health

Volumn 101, Issue 2, 2010, Pages 159-164

  Teschke, Kay ^a   Marino, Suhail ^a   Chu, Rong ^b   Tsui, Joseph K C ^a   Harris, M Anne ^a   Marion, Stephen A ^a  

^a UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^b MCMASTER UNIVERSITY   (Canada)

Author keywords

Epidemiology; Ethics; Participation

Indexed keywords

ADULT; AGED; ARTICLE; CANADA; FEMALE; HUMAN; MALE; MEDICAL RESEARCH; MIDDLE AGED; PATIENT ATTITUDE; PSYCHOLOGICAL ASPECT; PUBLIC OPINION; RESEARCH SUBJECT;

ADULT; AGED; AGED, 80 AND OVER; BIOMEDICAL RESEARCH; BRITISH COLUMBIA; FEMALE; HUMANS; MALE; MIDDLE AGED; PATIENT ACCEPTANCE OF HEALTH CARE; PUBLIC OPINION; RESEARCH SUBJECTS; YOUNG ADULT;

EID: 77954721433     PISSN: 00084263     EISSN: None     Source Type: Journal    
DOI: 10.1007/bf03404364     Document Type: Review

References (27)

1. Canadian Institutes of Health Research, Natural Sciences and Engineering Council of Canada, Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa: The Councils, 1998 (with 2000, 2002, 2005 amendments).
2. European Union. Directive 95/46/EC of the European parliament and of the council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and the free movement of such data. 1995.
3. Data Protection Act 1998. London: Stationery Office, 1998.
4. Plater S, Seeley E, Dixon LA. Two routes to privacy protection: A comparison of health information legislation in Canada and the United States. J Womens Health 1998;7:665-72.
5. Appelbaum PS. Protecting privacy while facilitating research. Am J Psychiatry 2000;157:1725-26.
6. Verity C, Nicoll A. Consent, confidentiality and the threat to public health surveillance. BMJ 2002;324:1210-13.
7. Coleman MP, Evans BG, Barrett G. Confidentiality and the public interest in medical research - will we ever get it right? Clin Med 2003;3(3):219-28.
8. Peto J, Fletcher O, Gilham C. Data protection, informed consent and research. BMJ 2004;328:1029-30.
9. Beskow LM, Botkin JR, Daly M, Juengst ET, Lehmann LS, Merz JF, et al. Ethical issues in identifying and recruiting participants for familial genetic research. Am J Med Genet 2004;130(4):424-31.
10. Iversen A, Liddell K, Fear N, Hotopf M, Wessely S. Consent, confidentiality, and the Data Protection Act. BMJ 2006;332:165-69.
11. Hewison J, Haines A. Overcoming barriers to recruitment in health research. BMJ 2006;333:300-2.
12. Baker R, Sheils C, Stevenson K, Fraser R, Stone M. What proportion of patients refuse consent to data collection from their records for research purposes? Br J Gen Pract 2000;50:655-56.
13. Woolf SH, Rothemich SF, Johnson RE, Marsland DW. Selection bias from requiring patients to give consent to examine data for health services research. Arch Fam Med 2000;9:111-18.
14. Asai A, Ohnishi M, Nishigaki E, Sekimoto M, Fukuhara S, Fukui T. Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: Preliminary findings based on focus group interviews. BMC Med Ethics 2002;3:E1.
15. Nelson K, Garcia RE, Brown J, Mangione CM, Louis TA, Keeler E, Cretin S. Do patient consent procedures affect participation rates in health services research? Med Care 2002;40:283-88.
16. Willison DJ, Keshavjee K, Nair K, Goldsmith C, Holbrook AM. Patient consent preferences for research uses of information in electronic medical records: Interview and survey data. BMJ 2003;326:373-77.
17. Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM. Public attitudes towards the use of primary care patient record data in medical research without consent: A qualitative study. J Med Ethics 2004;30:104-9.
18. Zurita L, Nohr C. Patient opinion - EHR assessment from the users perspective. Medinfo 2004;11(Pt 2):1333-36.
19. Beto JA, Geraci MC, Marshall PA, Bansal VK. Pharmacy computer prescription databases: Methodologic issues of access and confidentiality. Ann Phar-macother 1992;26:686-91.
20. Campbell Research and Consulting. The Impact of Privacy Legislation on NHMRC Stakeholders - Comparative Stakeholder Analysis. Report to National Health and Medical Research Council, Department of Health and Ageing, Canberra, 2004. Available at: http://www.nhmrc.gov.au/about/-files/st8.pdf (Accessed March 23, 2009).
21. Barrett G, Cassell JA, Peacock JL, Coleman M P. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ 2006;332:1068-72.
22. Kho ME, Duffett M, Willison DJ, Cook DJ, Brouwers MC. Written informed consent and selection bias in observational studies using medical records: Systematic review. BMJ 2009;338:b866.
23. Harris MA, Levy AR, Teschke K. Personal privacy and public health: Potential impacts of privacy legislation on health research in Canada. Can J Public Health 2008;99:293-96.
24. Little J, Berrens R. Explaining disparities between actual and hypothetical stated values: Further investigation using meta-analysis. Economics Bulletin 2004;3:1-13.
25. Willison D. Privacy and the secondary use of data for health research: Experience in Canada and suggested directions forward. J Health Serv Res Policy 2003;8(Suppl 1):17-23.
26. Willison DJ, Emerson C, Szala-Meneok KV, Gibson E, Schwartz L, Weisbaum KM, et al. Access to medical records for research purposes: Varying perceptions across research ethics boards. J Med Ethics 2008;34:308-14.
27. De Wet HCW, Dekker JM, Van Veen EB, Olsen J. Access to data from European registries for epidemiological research: Results from a survey by the International Epidemiological Association European Federation. Int J Epidemiol 2003;32:1114-15.