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Consent for autopsy research for unexpected death in early life
Hein J Odendaal1, Amy Elliott, Hannah C Kinney
1*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.
Insights
Obtaining consent for stillbirth and sudden infant death syndrome (SIDS) research tissue donation requires sensitive communication strategies, especially in disadvantaged communities. Open, transparent interviews are crucial for building trust and facilitating research participation.
Area of Science:
- Perinatal and infant mortality research
- Bioethics and informed consent
- Public health and vulnerable populations
Background:
- Sudden death in fetuses (stillbirth) and infants (sudden infant death syndrome [SIDS]) necessitates urgent research, particularly in socioeconomically disadvantaged groups.
- Autopsy tissue analysis is critical for this research but obtaining consent for tissue donation is challenging in these populations due to mistrust.
- Effective communication strategies are needed to address barriers to consent for research on autopsy tissues.
Discussion:
- Recommendations focus on preparation, timing, setting, and content of consent interviews for autopsy tissue research.
- Strategies emphasize open and transparent communication, applicable to both autopsy consent and research consent.
- Healthcare workers must be aware of unique grief expressions and attitudes toward research in disadvantaged populations.
Key Insights:
- Tailored communication strategies are essential for obtaining consent for research on stillbirth and SIDS autopsy tissues.
- Building trust through transparency is paramount when engaging socioeconomically disadvantaged families.
- Addressing specific cultural and emotional factors is key to successful consent processes.
Outlook:
- Implementing these communication strategies can improve participation in vital perinatal and infant mortality research.
- Further research may explore the long-term impact of trust-building initiatives on consent rates.
- Disseminating these best practices can enhance ethical research conduct across diverse populations.
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.
