Consent for autopsy research for unexpected death in early life

Abstract

Research in sudden death in fetuses (stillbirth) and infants (sudden infant death syndrome [SIDS]) is urgently needed, particularly in high-risk populations involving socioeconomic disadvantaged families. Essential to such research is the analysis of fetal and infant tissues at autopsy. Obtaining consent for donating autopsy tissues for research is especially problematic in socioeconomically disadvantaged populations in which mistrust of the medical establishment often exists. In this article, we present communication strategies for obtaining consent for research in autopsy tissues of stillbirth and SIDS cases in socioeconomically disadvantaged populations. Recommendations are provided about preparation for and the timing, setting, and content of the consent interview. The same lines of open and transparent communication delineated in this article are applicable to obtaining consent for the autopsy and autopsy research. Although the grief responses to the untimely death of the fetus or infant are universal and the recommendations of this essay are widely applicable to the general population, the expression of this grief and feelings toward autopsy-based research in socioeconomically disadvantaged populations may raise special issues that health care workers should be aware of when obtaining consent for research on autopsy-derived tissues.