104 - Visualizing Consent: Reviewing Legal Language in Body Donation Documents

Poster Board Number: 104
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Odd poster #s – first hour
Even poster #s – second hour

Co-authors:

Krystiana Krupa, MA - NAGPRA Program Officer, University of Illinois Urbana-Champaign

Abstract Body : Systematic reviews of consent documentation have found that the information covered in legal documents required for body donation is widely variable. The current project aimed to review the legal language of consent to identify differences between types of donation programs, as well as information provided and agreed to by willed-body donors. This review covered the following categories within the consent document: acceptable uses, exclusion criteria, retention time, transport, and disposition. Perhaps most fascinating is the (likely intentional) vague wording throughout these categories in the reviewed documents. In a sample of willed-body programs, the authors found that 83 of 91 (91.2%) include language reflecting consent for education and 75 (82%) include language reflecting consent for research. However, only 15 (16.5%) and 13 (14.3%) of the total number sampled specify how imaging and health data, respectively, may be used in such contexts. Surprisingly, almost half of the consent documents (45/91) make no mention of the amount of time the body is kept on hand. Some programs also have differing levels of body autonomy as it relates to individualized consent for permanent use (15.4%) or transportation of the body to another institution (7.7%). In comparison, 25.3% and 35.2%, respectively, leave the decisions for permanent use or transport up to the institution. Allowing for more individualized levels of consent may help to increase the number of whole-body donors who would like to have more say in the post-mortem use of their body. These insights shine light on the lack of consistency of information within legal documents provided to those interested in whole body donation.