The legal implications of report back in household exposure studies

Abstract

Background: Scientists conducting research into household air or dust pollution must decide whether, when, and how to disclose to study participants their individual results. A variety of considerations factor into this decision, but one factor that has not received attention until now is the possibility that study participants’ receipt of their results might create legal duties under environmental, property, landlord-tenant, or other laws. Objectives: This article examines relevant laws and regulations and explores the scope of participants’ legal duties and the resulting legal and ethical consequences for researchers. Participants could be required in some situations to disclose the presence of certain chemicals when selling or renting their homes or to frequent visitors. The article discusses hypothetical case studies involving the reporting back of results regarding lead, polychlorinated biphenyls, and phthalates. Discussion: The potential legal duties of study participants have both ethical and legal implications for researchers. Issues include whether the legal consequences for participants should affect the decision whether to report back individual results, how researchers should disclose the legal risks to participants during the informed consent process, and whether researchers would be liable to study participants for legal or economic harm arising from reporting study results to them. The review provides recommendations for language that researchers could use in the informed consent process to disclose the legal risks. Conclusions: Researchers should still report back to participants who want to see their results, but they should disclose the risks of obtaining the information as part of the informed consent process.