David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
M. E. M. da Silva, C. M. Coeli, M. Ventura, M. Palacios, M. M. F. Magnanini, T. M. C. R. Camargo & K. R. Camargo
Journal of Medical Ethics 38 (10):639-642 (2012)
Background Record linkage is a useful tool for health research. Potential benefits aside, its use raises discussions on privacy issues, such as whether a written informed consent for access to health records and linkage should be obtained. The authors aim to systematically review studies that assess consent proportions to record linkage. Methods 8 databases were searched up to June 2011 to find articles which presented consent proportions to record linkage. The screening, eligibility and inclusion of articles were conducted by two independent reviewers. The authors carried out meta-regression, subgroup and sensitivity analyses to assess heterogeneity. Results Of the 141 studies identified, only 11 presented empirical consent proportions and were included in the systematic review. The consent proportion varied widely from 39% to 97%. Seven studies presented consent proportions of 88% or higher, one of 72%, and only three presented consented proportion equal to or lower than 53%. None of the studies' characteristics evaluated explained heterogeneity. Conclusion The results of this review show that, in general, individuals tend to consent to the use of their data for record linkage, with exceptions in specific populations or minorities. The authors believe that this, as well as the cited literature, lends support to policies that, while keeping relevant ethical controls in place, do not require individual informed consent for each and every study that relies on secondary data
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Deborah Bowman (2011). Informed Consent: A Primer for Clinical Practice. Cambridge University Press.
Shaun D. Pattinson (2009). Consent and Informational Responsibility. Journal of Medical Ethics 35 (3):176-179.
David Shaw (2009). Prescribing Placebos Ethically: The Appeal of Negatively Informed Consent. Journal of Medical Ethics 35 (2):97-99.
Michelle H. Biros (2007). Research Without Consent: Exception From and Waiver of Informed Consent in Resuscitation Research. Science and Engineering Ethics 13 (3):361-369.
Sheila McLean (2010). Autonomy, Consent and the Law. Routledge-Cavendish.
Leonard J. Haas (1991). Hide-and-Seek or Show-and-Tell? Emerging Issues of Informed Consent. Ethics and Behavior 1 (3):175 – 189.
Jukka Varelius (2010). On Taylor's Justification of Medical Informed Consent. Bioethics 26 (4):207-214.
Neil C. Manson (2007). Rethinking Informed Consent in Bioethics. Cambridge University Press.
M. Sheehan (2011). Can Broad Consent Be Informed Consent? Public Health Ethics 4 (3):226-235.
Emma Bullock (2010). Informed Consent as Waiver: The Doctrine Rethought? Ethical Perspectives 17 (4):529-555.
Jukka Varelius (2009). Collective Informed Consent and Decision Power. Science and Engineering Ethics 15 (1):39-50.
Janet L. Brody, John P. Cluck & Alfredo S. Aragon (1997). Participants' Understanding of the Process of Psychological Research: Informed Consent. Ethics and Behavior 7 (4):285 – 298.
James R. P. Ogloff & Randy K. Otto (1991). Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research. Ethics and Behavior 1 (4):239 – 252.
Loretta M. Kopelman (1994). Informed Consent and Anonymous Tissue Samples: The Case of Hiv Seroprevalence Studies. Journal of Medicine and Philosophy 19 (6):525-552.
Ezio Di Nucci (2013). Habits, Nudges, and Consent. American Journal of Bioethics 13 (6):27 - 29.
Added to index2012-03-09
Total downloads3 ( #284,287 of 1,096,895 )
Recent downloads (6 months)1 ( #273,368 of 1,096,895 )
How can I increase my downloads?