“Donating our bodies to science”: A discussion about autopsy and organ donation in Turner syndrome

Siddharth K. Prakash, Adrianna K. San Roman, Melissa Crenshaw, Barbara Flink, Kimberly Earle, Evan Los, Åsa Bonnard, Angela E. Lin

Research output: Contribution to journalReview articlepeer-review

Abstract

At the Third Turner Resource Network Symposium, a working group presented the results of collaborative discussions about the importance of autopsy in Turner syndrome (TS). Considerable gaps in understanding the causes of death in TS can only be closed by more frequent death investigations and autopsies. The presentation included an overview of autopsy methods, strategies for utilizing autopsy, and biobanking to address research questions about TS, and the role of palliative care in the context of autopsy. This review highlights strategies to promote autopsy and tissue donation, culminating with an action plan to increase autopsy rates in the TS community.

Original languageEnglish (US)
Pages (from-to)36-42
Number of pages7
JournalAmerican Journal of Medical Genetics, Part C: Seminars in Medical Genetics
Volume181
Issue number1
DOIs
StatePublished - Mar 2019
Externally publishedYes

Keywords

  • Turner syndrome
  • autopsy
  • molecular autopsy
  • palliative care
  • postmortem examination
  • sex chromosome abnormality syndrome

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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