title: 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.
authors.affiliation: *For members of the PASS Network, see the Appendix online at http://links.lww.com/AOG/A212. From the Department of Obstetrics and Gynecology, Faculty of Health Science, Stellenbosch University, Tygerberg, South Africa; the Health Disparities Research Center, Sanford Research/University of South Dakota, Sioux Falls, South Dakota; the Department of Pathology, Children's Hospital Boston and Harvard Medical School, Boston, Massachusetts; the Department of Pathology, University of South Dakota School of Medicine, Sioux Falls, South Dakota; the Division of Forensic Medicine and Pathology, Department of Pathology and Western Cape Forensic Pathology Services, Health Science Faculty, Stellenbosch University, Cape Town, South Africa.
authors.forename: Hein J
authors.initials: HJ
authors.lastname: Odendaal
authors.forename: Amy
authors.initials: A
authors.lastname: Elliott
authors.forename: Hannah C
authors.initials: HC
authors.lastname: Kinney
authors.forename: Melanie
authors.initials: M
authors.lastname: Human
authors.forename: Donna
authors.initials: D
authors.lastname: Gaspar
authors.forename: Derek
authors.initials: D
authors.lastname: Petersen
authors.forename: Brad
authors.initials: B
authors.lastname: Randall
authors.forename: Johan
authors.initials: J
authors.lastname: Dempers
mesh_terms: D001344:Autopsy; D003142:Communication; D006801:Humans; D007231:Infant, Newborn; D033282:Parental Consent / Q000523:psychology*; D012959:Socioeconomic Factors; D050497:Stillbirth; D013398:Sudden Infant Death