Table 1 Frameworks for Communicating Biomonitoring Results
Framework | Orientation | Right-to-Know Emphasis | Communication Strategy | Protocol Development |
|---|---|---|---|---|
Clinical Ethics | Biomedical | Weak | Individual results communicated if exposures reach clinical action levels, or if exposure/health outcome relationships are understood. | Protocols developed primarily by scientific and medical experts. Participant confidentiality is paramount. No opportunities for participants to share results with each other. |
Community-Based Participatory Research | Prevention | Strong, while also protecting participants' right-not-to-know their results. | Encourages communication of aggregate and individual-level results to study participants with an emphasis on explaining scientific uncertainties and addressing concerns about community stigmatization. Participant right-to-know explained at the point of study recruitment and consent. | Protocols developed jointly by scientific and community partners. Confidentiality of participants is important, although some studies may offer opportunities for participants to share results with each other, if they wish. Protocols seek to balance community-right-to-know with individual right-to-know. |
Citizen-Science Data Judo | Advocacy | Strong | Encourages report-back of aggregate and individual-level results to study participant to support precautionary individual action, communications, and policy change. | Protocols developed by scientific experts affiliated with advocacy organizations, sometimes with consultation from study participants. Participants encouraged to share results with each other and to speak publicly about their results to the media and broader public. |