Consenting to uncertainty: challenges for informed consent to disease screening—a case study
- 121 Downloads
This paper uses chronic beryllium disease as a case study to explore some of the challenges for decision-making and some of the problems for obtaining meaningful informed consent when the interpretation of screening results is complicated by their probabilistic nature and is clouded by empirical uncertainty. Although avoidance of further beryllium exposure might seem prudent for any individual whose test results suggest heightened disease risk, we will argue that such a clinical precautionary approach is likely to be a mistake. Instead, advice on the interpretation of screening results must focus not on risk per se, but on avoidable risk, and must be carefully tailored to the individual. These points are of importance for individual decision-making, for informed consent, and for occupational health.
KeywordsInformed consent Clinical uncertainty Environmental health Occupational health Occupational disease Disease screening Risk Risk control Beryllium disease Disease prevention BeLPT Beryllium lymphocyte proliferation test Beryllium sensitization Rational decision-making
- 1.Poulin, Maurice, and Sylvie Ricard. 2004. Le test sanguin de prolifération lymphocytaire au béryllium (belpt). Québec: Institut National de Santé Publique du Québec.Google Scholar
- 2.Marchand-Adam, S., F. Guillon, M. Brauner, and D. Valeyre. 2005. Bérylliose pulmonaire chronique (2e partie). Revue des Maladies Respiratoires 22: 271–287.Google Scholar
- 7.Agency for Toxic Substances and Disease Registry. 2006. Testing for beryllium sensitization a community service. http://www.atsdr.cdc.gov/sites/brushwellman/docs/Be_FINAL_REPORT_NOV15_2006.pdf. Accessed 13 December 2007.
- 8.U.S. Department of Energy, Office of Worker Health and Safety. 1999. Chronic beryllium disease prevention program final rule: Economic analysis. http://www.hss.energy.gov/HealthSafety/WSHP/be/archives/CBDPP_Final_Economic_Analysis4.pdf. Accessed 13 December 2007.
- 9.Wilson, J.M.G., and G. Junger. 1968. Principles and practice of screening for disease. Geneva: World Health Organization.Google Scholar
- 10.UK National Screening Committee. 2003. Criteria for appraising the viability, effectiveness and appropriateness of a screening programme. http://www.library.nhs.uk/screening/ViewResource.aspx?resID=59772&tabID=288&catID=6777. Accessed 13 December 2007.
- 13.Chronic beryllium disease prevention program, subpart C: Specific program requirements—medical removal. Code of Federal Regulations Title 10, Pt. 850.35, 2007 ed.Google Scholar
- 14.Faden, Ruth, and Tom Beauchamp. 1986. A history and theory of informed consent. New York: Oxford University Press.Google Scholar
- 15.Manson, Neil C., and Onora O’Neill. 2007. Rethinking informed consent in bioethics. Cambridge, UK: Cambridge University Press.Google Scholar
- 16.Occupational health and safety standards, subpart Z: Toxic and hazardous substances—air contaminants. Code of Federal Regulations Title 29, Pt. 1910.1000, 2007 ed.Google Scholar