Biomonitoring is a technique for assessing exposures to chemical substances in the body through testing blood, urine, semen, amniotic fluid, breast milk, saliva, hair, and fingernails and other human tissues. Examples of chemicals that can be tested for include lead, pesticides, Bisphenol A, phthalates, and PBDEs (flame retardants).
Biomonitoring is becoming more popular and increasingly sophisticated, raising significant ethical concerns. Guidelines across different Research Ethics Boards lack consistency. As well, there is often no reference range of safe levels of exposure for many of the chemicals tested, making it difficult to interpret results. Biomonitoring can accurately assess exposure but cannot predict an individual’s likelihood of becoming ill, which is usually what study participants are most interested in knowing. When the risks of chemical exposures are unknown should researchers inform participants of their individual results?
Under the traditional clinical model of biomonitoring, researchers only communicate individual results if exposure levels are deemed significantly high or if there is a clear link between exposure level and health outcome, such as in the case of lead. Results can usually only be individually communicated by physicians, who are able to explain health risks.
However, the clinical model has significant limitations. Investigators become gatekeepers of individual information. Individuals are treated as mere sources of scientific data with no claim to share in the study’s results. As well, it does not allow individuals to carry out precautionary action if they turn out to have high chemical body burdens.
Study participants are in many cases starting to demand to receive their individual results, despite the lack of knowledge about individual health effects due to exposures. Research has shown that most individuals find disclosure of test results beneficial, regardless of the actual result or accompanying psychic distress. As well, negative effects of reporting back can be mitigated through appropriate protocols and communication techniques.
Alternative models of reporting back allow individuals more control over their results. Newer biomonitoring studies that report back individual results as part of community-researcher partnerships emphasize participants’ right to know and right to act, and fuel activism and policy changes.
Under the emerging model of community-based participatory research (CBPR), reporting back individual and aggregate study results can empower individuals and communities to act on scientific research. CBPR encourages as much dissemination of information as possible and asserts that the collected data belongs primarily to the study participants. An example of this model is the First Nations Biomonitoring Initiative, which will provide a baseline of chemical body burdens on First Nations reserves in Canada, with control over all resulting data retained by the participating communities.
As well, some activist groups are carrying out biomonitoring research with the explicit goal of improving chemical regulation and policy. This “citizen science” aims to raise awareness of the risks of chemical exposures and engage individuals in collective action. Citizen science is advocacy driven and treats all exposures as significant. For example, Sharyle Patton, from the environmental advocacy group Commonweal, found that migrant farm workers in California developed a strong activist community as a result of participating in biomonitoring research.
Despite the limitations of biomonitoring there are compelling reasons to report back biomonitoring results. Providing individual results can lead to increased awareness of everyday exposures to toxic chemicals. As well, there is potential for increased political engagement as a consequence of learning about chemical body burdens. Receiving biomonitoring results can therefore be an important tool in campaigns to improve regulation of toxic chemicals.