Communicating serum chemical concentrations to study participants: follow up survey
Alexandra J Buck1, John E Vena, Bridget M McGuinness
1Division of Epidemiology, Statistics and Prevention Research, Eunice Kennedy Shriver National Institute of Child Health & Human Development, 6100 Executive Blvd,, Rockville, Maryland 20852, USA. cooneyma@mail.nih.gov
Background:
A considerable literature now supports the importance of effective communication with study participants, including how best to develop communication plans focusing on the uncertainty of health risks associated with particular environmental exposures. Strategies for communicating individual concentrations of environmental chemicals in human biological samples in the absence of clearly established safe or hazardous levels have been discussed from a conceptual basis and to a lesser extent from an empirical basis. We designed and evaluated an empirically based communication strategy for women of reproductive age who previously participated in a prospective study focusing on persistent environmental chemicals and reproductive outcomes.
Methods:
A cohort of women followed from preconception through pregnancy or up to 12 menstrual cycles without pregnancy was given their individual serum concentrations for lead, dichloro-2,2-bisp-chlorophenyl ethylene, and select polychlorinated biphenyl congeners. Two versions of standardized letters were prepared depending upon women's exposure status, which was characterized as low or high. Letters included an introduction, individual concentrations, population reference values and guidance for minimizing future exposures. Participants were actively monitored for any questions or concerns following receipt of letters.
Results:
Ninety-eight women were sent letters informing them of their individual concentrations to select study chemicals. None of the 89 (91%) participating women irrespective of exposure status contacted the research team with questions or concerns about communicated exposures despite an invitation to do so.
Conclusions:
Our findings suggest that study participants can be informed about their individual serum concentrations without generating unnecessary concern.
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