Challenges of worker notification in neurotoxic studies of the central nervous system

Researchers who study the central nervous system (CNS) face special challenges in notifying study participants about the research results. There are human research guidelines regarding the communication of information to subjects at the outset of a CNS research study. Yet there are few guidelines on how to communicate to the subject the research findings and the interpretation of individual results at the study's conclusion. The research subjects may desire detailed information, unequivocal conclusions, understandable interpretations, and clear suggestions about what to do next. Fulfilling these needs, however, is not a simple task for the researcher because outcomes are predicated on statistical uncertainty and the research tests may not be appropriate for individual assessment. We describe methods we have used to communicate with research subjects in two CNS neurotoxic field studies. We suggest that further research examine this important notification process.