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J Med Ethics 36:736-740 doi:10.1136/jme.2010.036517
  • Clinical ethics
  • Paper

Understanding preferences for disclosure of individual biomarker results among participants in a longitudinal birth cohort

  1. Bruce P Lanphear2,6
  1. 1Department of Internal Medicine, University of Cincinnati, Cincinnati, Ohio, USA
  2. 2Children's Environmental Health Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA
  3. 3Department of Environmental Health, University of Cincinnati, Cincinnati, Ohio, USA
  4. 4Department of Public Health Sciences, University of Cincinnati, Cincinnati, Ohio, USA
  5. 5Center for Clinical Effectiveness, University of Cincinnati, Cincinnati, Ohio, USA
  6. 6Child & Family Research Institute, BC Children's Hospital and Simon Fraser University, Vancouver, British Columbia, Canada
  1. Correspondence to Dr Stephen E Wilson, 231 Albert Sabin Way, Room 6601, Cincinnati, OH 45267-0535, USA; stephen.wilson{at}uc.edu
  1. Contributors All authors contributed to the writing of this manuscript, and agree that it is ready for publication. S Wilson, E Baker, B Lanphear originated the study. A Leonard, M Eckman Completed the statistical analysis. S Wilson led the writing of the manuscript.

  • Received 5 March 2010
  • Revised 28 July 2010
  • Accepted 13 August 2010
  • Published Online First 8 October 2010

Abstract

Background To describe the preferences for disclosure of individual biomarker results among mothers participating in a longitudinal birth cohort.

Methods We surveyed 343 mothers that participated in the Health Outcomes and Measures of the Environment Study about their biomarker disclosure preferences. Participants were told that the study was measuring pesticide metabolites in their biological specimens, and that the health effects of these low levels of exposure are unknown. Participants were asked whether they wanted to receive their results and their child's results. In addition, they were asked about their preferred method (letter vs in person) and format (more complex vs less complex) for disclosure of results.

Results Almost all of the study participants wanted to receive their individual results (340/343) as well as their child's results (342/343). However, preferences for receiving results differed by education level. Mothers with less than a college degree preferred in-person disclosure of results more often than mothers with some college education or a college degree (34.3% vs 17.4% vs 7.9%, p<0.001). Similarly, mothers with less than a college education preferred a less complex disclosure format than mothers with some college education or a college degree (59.7% vs 79.1% vs 86.3%, p<0.0001).

Conclusion While almost all study participants preferred to receive results of their individual biomarker tests, level of education was a key factor in predicting preferences for disclosure of biomarker results. To ensure effective communication of this information, disclosure of biomarker results should be tailored to the education level of the study participants.

Footnotes

  • Funding This work was supported by the National Institutes of Health [K01CA123355-01A1 to SEW and ACL, P01ES011261 to BPL]; and the American Academy of Pediatrics Julius P Richmond Center and Flight Attendants for Medical Research Institute.

  • Competing interests None.

  • Patient consent Obtained.

  • Ethics approval This study was conducted with the approval of the Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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