Analysis of statements in documents of gift for academic body donation programs in the United States, and recommendations for future practice

Abstract

In US anatomical gift law, the record on which a person consents to body donation after death is referred to as a document of gift (DG). Due to the lack of legal requirements around minimum information standards, enacted recommendations in the United States, and the unknown variation across extant DGs, a review of publicly‐available DGs from US academic body donation programs were performed to benchmark existing statements and recommend specific foundational content for all US DGs. From 117 body donor programs identified, 93 DGs were downloaded (median length three pages, range 1–20). Statements within the DG were qualitatively categorized into 60 codes within eight themes (Communication, Eligibility, Terms of Use, Logistics, Legal References, Financials, Final Disposition, and Signatures), using existing recommendations of academics, ethicists, and professional associations to guide analysis. Of 60 codes, 12 had high disclosure rates (67%–100% of DGs included; e.g., donor personal information), 22 had moderate rates (34%–66%; e.g., discretion to decline a body), and 26 had low disclosure rates (1%–33%; e.g., testing bodies for disease). Some codes with the lowest disclosure frequency were those previously recommended as necessary. Findings highlighted substantial variation in DG statements, with a higher number of baseline disclosure statements than previously recommended. These results present an opportunity to better understand disclosures that have importance for programs and donors alike. Recommendations suggest minimum standards of informed consent practices for body donation programs in the United States. These include clarity around consent processes, consistency of language, and minimum operational standards for informed consent.

Investigating the status of whole‐body donation across the United States of America

“…As analyses of the disclosures in donor enrollment consent forms have shown, there is significant variation in the consent process for body donation, and this has drawn into question whether some of the donation forms were truly gathering informed consent from prospective donors and providing appropriate disclosures. 42,43 Similar findings were brought to light in this study when analyzing the options provided to donors during the consent process. 43 A majority of BDPs do not allow donors to dictate the length that their body is retained by the university after death, or to opt out of certain types of education or research involving their donated remains.…”

“…The difficulty posed by body donation compared to other forms of medical bodily autonomy is that once a donor has passed, they are no longer able to express consent or make their wishes known. As analyses of the disclosures in donor enrollment consent forms have shown, there is significant variation in the consent process for body donation, and this has drawn into question whether some of the donation forms were truly gathering informed consent from prospective donors and providing appropriate disclosures 42,43 . Similar findings were brought to light in this study when analyzing the options provided to donors during the consent process 43 .…”

“…However, questions remain about how ethical guidelines can be effectively implemented, and further, how they may be nationally enforced. Prior research has shed light on some of the differences between BDPs across the United States and shown that there is little uniformity and compliance among American BDPs regarding the recommendations set forth by anatomical societies regarding consent and oversight 37,42,43 . For example, despite recommendations to describe all possible uses of donated bodies to achieve fully informed consent, 39,44 a review of US BDP consent forms revealed that these documents rarely provided specific language about use beyond education and research, and only 28% of these forms indicated that body parts may be permanently retained by the institution 43 .…”

“…Prior research has shed light on some of the differences between BDPs across the United States and shown that there is little uniformity and compliance among American BDPs regarding the recommendations set forth by anatomical societies regarding consent and oversight. 37,42,43 For example, despite recommendations to describe all possible uses of donated bodies to achieve fully informed consent, 39,44 a review of US BDP consent forms revealed that these documents rarely provided specific language about use beyond education and research, and only 28% of these forms indicated that body parts may be permanently retained by the institution. 43 This work highlights informational gaps found in many body donation consent forms, raising questions about just how informed donors and next of kin truly are when enrolling in these programs, and whether these programs are supporting donor autonomy to the best of their ability.…”

“…43 This work highlights informational gaps found in many body donation consent forms, raising questions about just how informed donors and next of kin truly are when enrolling in these programs, and whether these programs are supporting donor autonomy to the best of their ability. 42,43 Additionally, the way in which BDPs handle donor anonymity varies among programs. A survey of BDPs showed that there is great variability in the amount of information provided to students about their donors, ranging from no information at all to universities disclosing the full names and complete health history of the donors to their students.…”