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Deceased Donor Families and Authorization for Research: Differences among Ethnic Groups

M. Ortigosa-Goggins, J. J. Gaynor, E. Shipman, L. Preczewski, G. Guerra

Miami Transplant Institute, University of Miami, Miami, FL

Meeting: 2020 American Transplant Congress

Abstract number: A-229

Keywords: Cadaveric organs, Donation, Ethics, Kidney transplantation

Session Information

Session Name: Poster Session A: Deceased Donor Management and Intervention Research

Session Type: Poster Session

Date: Saturday, May 30, 2020

Session Time: 3:15pm-4:00pm

 Presentation Time: 3:30pm-4:00pm

Location: Virtual

*Purpose: Clinical research in transplantation is key to advancement of the field. NIH-sponsored trials such as HOPE in Action and APOLLO network require deceased donor families(DDF) to authorize for participation in research. Our aim was to determine the rate of research authorization by DDF(i.e.,next of kin(NOK) within the different ethnic groups: African American, African ancestry (AA), Caucasian/white (W) and Hispanic/Latin (H).

*Methods: Single center study of all deceased donor kidney transplants referred to our institution during 3/1/2019-10/31/2019 from multiple organ procurement organizations(OPO) across the United States. We looked at the authorization for donation form in DonorNet. We searched for the NOK research authorization agreement at the time of organ donation. In cases of registered donors, we looked at the state laws for research and education as well as NOK research authorization. Donors were grouped by self-identified ethnic groups as W, AA or H

*Results: There were a total of 279 donors, yielding 373 kidney offers at our institution. 81% were imported from 46 different OPOs and 19% from our local OPO. Mean donor age (±SE) was 46.1±0.9. Donor ethnicity distribution was W 171 (61.3%); AA 64 (22.9%) and H 44 (15.8%). Overall 214 (76.7%) donors’ NOK authorized for research and 65 (23.3%) declined research. Donor age <35yr had a lower rate of authorization 65.7% vs 81.2% and 80.0% for 35-49yr and>50yr respectively p=0.04. Table 1 shows ethnic distribution on rate of NOK authorization for research, which was significantly lower within AA donors 38/64 (59.4%)(p=0.0008).Stepwise logistic regression showed donor age<35yr and AA donor as more likely to have declined research authorization, yielding multivariable p=0.0002 for AA donor and p=0.02 for younger donor age. Multivariable percentages who declined research authorization had highest rate among AA donors<35yr at 50%(9/18) compared to 37.0%(17/46) in AA donors>35yr; 28.8%(15/52) in W/H donors <35yr; and 14.7%(24/163) in W/H donors>35yr. Out of 373 donated kidneys, 89(23%) were not authorized to participate in research, of which 39/89(43.8%) were AA; 12/89(13.5%) were H and 38/89(42.7%) were W donors.

*Conclusions: In this representative sample of recent deceased donors from local and imported OPOs, the rate of declined authorization for research participation from deceased donor families is higher among donors from African American ethnicity compared to donors from Caucasian or Hispanic backgrounds, especially when donor age is <35. Community education is crucial in the field.

$$MISSING OR BAD TABLE SPECIFICATION {50E94283-0D21-444E-ACA6-FE32099A5EA7}$$

*p=0.0008 among the 3 groups.

Table 1: Rate of NOK Authorizarion for Research
Agree to Research W (n=171)* AA (n=64) H (n=44)
yes n% 144(84.2%) 38 (59.4%) 32 (72.7%)
no n% 27 (15.8%) 26 (40.6%) 12 (27.3%)
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To cite this abstract in AMA style:

Ortigosa-Goggins M, Gaynor JJ, Shipman E, Preczewski L, Guerra G. Deceased Donor Families and Authorization for Research: Differences among Ethnic Groups [abstract]. Am J Transplant. 2020; 20 (suppl 3). https://atcmeetingabstracts.com/abstract/deceased-donor-families-and-authorization-for-research-differences-among-ethnic-groups/. Accessed May 16, 2025.

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