Literature DB >> 21173659

Consent for autopsy research for unexpected death in early life.

Hein J Odendaal, Amy Elliott, Hannah C Kinney, Melanie Human, Donna Gaspar, Derek Petersen, Brad Randall, Johan Dempers.   

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.

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Year:  2011        PMID: 21173659      PMCID: PMC3268257          DOI: 10.1097/AOG.0b013e318200cb17

Source DB:  PubMed          Journal:  Obstet Gynecol        ISSN: 0029-7844            Impact factor:   7.661


  16 in total

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Review 2.  Stillbirth rates: delivering estimates in 190 countries.

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Review 3.  The perinatal autopsy: pertinent issues in multicultural Western Europe.

Authors:  Sanne J Gordijn; Jan Jaap H M Erwich; T Yee Khong
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Review 4.  African Americans and their distrust of the health care system: healthcare for diverse populations.

Authors:  Bernice Roberts Kennedy; Christopher Clomus Mathis; Angela K Woods
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Review 5.  The sudden infant death syndrome.

Authors:  Hannah C Kinney; Bradley T Thach
Journal:  N Engl J Med       Date:  2009-08-20       Impact factor: 91.245

6.  Tissue and organ donation for research in forensic pathology: the MRC Sudden Death Brain and Tissue Bank.

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Journal:  J Pathol       Date:  2007-12       Impact factor: 7.996

7.  Infant mortality trends and differences between American Indian/Alaska Native infants and white infants in the United States, 1989-1991 and 1998-2000.

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8.  Informed consent for the study of retained tissues from postmortem examination following sudden infant death.

Authors:  J G Elliot; D L Ford; J F Beard; K N Fitzgerald; P J Robinson; A L James
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10.  The autopsy: knowledge, attitude, and perceptions of doctors and relatives of the deceased.

Authors:  Olayiwola Abideen Oluwasola; Olufunmilayo I Fawole; Abiodun Jesse Otegbayo; Gabriel Olabiyi Ogun; Clement A Adebamowo; Afolabi Elijah Bamigboye
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  14 in total

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Journal:  Paediatr Perinat Epidemiol       Date:  2014-08-05       Impact factor: 3.980

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5.  The Institution of a Standardized Investigation Protocol for Sudden Infant Death in the Eastern Metropole, Cape Town, South Africa,.

Authors:  Johan J Dempers; Jean Coldrey; Elsie H Burger; Vonita Thompson; Shabbir A Wadee; Hein J Odendaal; Mary Ann Sens; Brad B Randall; Rebecca D Folkerth; Hannah C Kinney
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6.  Emerging Lingo-Cultural Inequality in Infant Autopsy in Quebec, Canada.

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7.  Effects of alcohol, cigarettes, methamphetamine and marijuana exposure during pregnancy on maternal serum alpha-fetoprotein levels at 20-24 weeks'gestation.

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Journal:  J Pediatr Neonatal Care       Date:  2018-02-27

8.  Serotonin Receptors in the Medulla Oblongata of the Human Fetus and Infant: The Analytic Approach of the International Safe Passage Study.

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9.  Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa.

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10.  Bereaved mothers' attitudes regarding autopsy of their stillborn baby.

Authors:  M Human; R D Goldstein; C A Groenewald; H C Kinney; H J Odendaal
Journal:  S Afr J Obstet Gynaecol (1999)       Date:  2017-12
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