Introduction: Human body donors play a crucial role in anatomical education, research, and clinical skills training. Those interested in anatomical donation may choose to bequeath their bodies to body donation programs (BDPs) housed by academic institutions across the country, state anatomical boards, or for-profit willed body programs. These programs rely heavily on the gift of body donors in order to continue to supply students and researchers with an invaluable educational resource. Despite recommendations from anatomical societies about best practices for BDPs, previous research has shown little uniformity or transparency throughout the donation consent process. While the literature contains numerous opinions from anatomists regarding whole body donation, the perspective of registered donors is underrepresented. The aim of this project was to assess current operations of BDPs across the United States and gather input from registered donors on the body donation process. Although previous research has focused on specific elements of donation, the current study focused on a comprehensive view of donation across the country in order to analyze trends, draw comparisons between programs, and evaluate the donor perspective.
Methods: The data in this project was gathered through multiple Qualtrics surveys. The first survey was sent to 125 BDPs across the United States in order to gather information about the trends and protocols at these institutions, and 72 program leaders (57%) responded to the questionnaire. Descriptive statistics were analyzed to summarize the similarities and differences between programs. The second survey was sent to 2,145 individuals that were currently enrolled in The Ohio State University’s BDP, and responses were received from 862 registered donors (40%). Results were analyzed to compute descriptive statistics and assess the relationship between demographics and survey responses.
Results: Results from the first survey showed that collectively, respondents across the nation receive 26,524 whole body donations annually. Findings showed that 70% (n = 44) receive enough donations to fit the needs of their institutions, 17% (n = 11) receive a surplus of donations, and 13% (n = 8) receive too few donations. Sixty-eight percent of programs (n = 47) permit next of kin body donation regularly or in times of need. On average, over 85% of the registered donor population is composed of White individuals, and only 6 institutions (9%) have methods in place to promote diversity among their donor population.
Findings from the second survey showed that when selecting a BDP to receive the donation, registrants most commonly selected OSU based on trust (45%, n = 385), a personal connection to the institution (37%, n = 316), or proximity (34%, n = 288). Less than one quarter of registered donors (23%, n = 194) felt that it was highly important to be able to select the purpose for their donation, but if given the option, 69% (n = 586) would elect to participate in anatomy education, 79% (n = 670) in research, and 62% (n = 527) in clinical skills training. Over 90% of donors felt comfortable sharing their age at time of death (96.3%, n = 823), cause of death (92.9%, n = 794), and past medical history (92.5%, n = 791) with those that will benefit from their gift, while fewer said they would consent to sharing more personal details such as first name (68.8%, n = 589), last name (46.7%, n = 400) or occupation (71.3%, n = 610). Only 9% of donors (n = 77) felt that their loved ones should be permitted to make changes to their enrollment forms after they have passed. A majority of registered donors (73%, n = 622) felt that it was of high importance for BDPs to have an advisory committee to oversee program operations, and similarly, most participants (71%, n = 605) felt that it is important for research projects involving body donors to go through an ethical review process. Women were significantly more likely to rate the ethical review process as important compared to men, and racial minorities expressed significantly less trust in the university compared to White registrants. When asked how the process could be improved, thematic analysis of participant statements revealed that registrants would like the university to raise more awareness about whole body donation, and that they would appreciate more consistent communication from the BDP throughout their lifetime as a registered donor.
Discussion: Overall, the results show that there is considerable variability in the operation of BDPs across the U.S., particularly in regard to consent, anonymity, costs, and restrictions for program admittance. Work is needed in order to increase diversity among the donor population. Feedback from registrants indicated which options donors value most, and highlighted ways in which the donation process can be improved. While a majority of registered donors do not place high importance on detailed consent options during the enrollment process, they do value BDP oversight.
Conclusion: The results from the study highlighted discrepancies in operational protocols between BDPs across the United States and showed which options are most important to donors during the enrollment process. These findings shed light on the donor perspective and lead to national recommendations for BDPs to enhance awareness, communication, standardization, and oversight while best supporting the needs of human body donors.