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Enhancing African American Participation 
in Biospecimens: A Case in Point for 
Pancreatic Cancer 
Linda Behar-Horenstein1,5,*, Rueben C. Warren2, V. Wendy Setiawan3,5, Corey Perkins,4 and Thomas D. 
Schmittgen4,5 

1Colleges of Education and 4Pharmacy, University of Florida, Gainesville, FL, USA, 2Tuskegee University, 
Tuskegee, AL, USA and 3College of Medicine, University of Southern California, Los Angeles, CA, USA, 
5Florida-California Cancer Research, Education and Engagement (CaRE2), Health Equity Center. 

*Corresponding author: Linda Behar-Horenstein, lsbhoren@ufl.edu. 

ABSTRACT 
Diseases of the pancreas (i.e. chronic pancreatitis, diabetes, and pancreatic cancer) disproportionally 
affect the African American community. Challenges associated with engaging the African American 
community in biospecimen research are longstanding. We surveyed a number of pancreas-related 
biobanks, and data repositories for African American representation. While some of the biobanks and 
databases surveyed contain biospecimens and data from African American donors at levels that reflect 
minority representation among the general population, others do not. A number of factors have 
historically contributed to reduced participation of the African Americans community in biospecimen 
donation including medical mistrust, lack of transparency, fear, and a poor knowledge and 
understanding about the use of biospecimens for research. Suggestions for increasing African American 
participation in organ and biospecimen donation include educational interventions, particularly in 
community groups, and providing printed and online recruitment materials to patients, patient 
advocates, and care partners. Increasing awareness of the many benefits of biospecimen donation 
among African Americans will positively affect health disparities research into pancreatic cancer and 
other diseases. 

KEYWORDS: Pancreatic Cancer, Health Disparities, Biospecimen 

Citation: Linda Behar-Horenstein et al (2021) Enhancing African American Participation in Biospecimens: A 
Case in Point for Pancreatic Cancer. Cancer Health Disparities 5:e1-e8. doi:10.9777/chd.2020.1005 
 
 
  



 
 
 
 
 

 
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INTRODUCTION 
Many facets of biomedical research require the 
collection, dissemination, and cellular, molecular, 
and genetic analysis of human biological 
specimens. For genetic and associated biological 
studies of racial disparity, it is essential to collect 
and analyze biological specimens from donors at 
levels that reflect minority representation among 
the general population. Ensuring adequate 
representation is imperative as a matter of social 
justice, economics, and science (Regnante et al., 
2020). Such biospecimens include normal and 
diseased tissues, blood, and other bodily fluids. 
While the most recent census data set the African 
American population at 13.2% (Colby and Ortman, 
2015), biological specimen collection and 
associated data generated from those specimens 
may not reflect the representation of African 
Americans in the USA. In an analysis of studies 
involving genomic sequencing, African Americans 
are underrepresented for most cancers in The 
Cancer Genome Atlas (TCGA) Program and male 
African Americans are especially underrepresented 
compared to their female counterparts (Kim and 
Sarkar, 2019). These data underscore the need for 
appropriate samples. Genome-wide association 
studies (GWAS) of cancer have identified a large 
number of cancer risk loci, however, less than 1% 
were first discovered in African Americans 
compared to 80% in European ancestry 
populations mainly because the small percentage 
of African ancestry samples included in the 
discovery phase of these studies (84% European; 
4% African) (Park et al., 2018). 

In this report, we surveyed a number of pancreas-
related biobanks, and data repositories for African 
American representation. We discuss how well 
those frequencies reflect minority representation 
among the general and specifically African 
American populations. We explore the challenges 

associated with procuring African American 
biospecimens and how a lack of donation impacts 
research outcomes designed to reduce the burden 
of diseases of the pancreas for this population. We 
conclude this paper with suggestions designed to 
increase African American participation in organ 
and biospecimen donation. 

Representation of African American 
biospecimens for diseases of the pancreas 
Diseases of the pancreas (i.e. chronic pancreatitis, 
diabetes, and pancreatic cancer) disproportionally 
affect the African American community. The 
incidences (per 100,000) of chronic pancreatitis, 
and pancreatic cancer in African Americans are 
11.3 and 11.7, respectively, compared to 5.1 and 7.5, 
respectively for Non-Hispanic Whites (2019; Yang 
et al., 2008). The percentage of diagnosed 
diabetes in the USA for African Americans and 
Non-Hispanic Whites are 13.3 and 9.4, respectively 
(2020). Health disparity research on diseases of the 
pancreas are impacted by the minority 
representation of tissues, tumors and other bio-
specimens related to pancreatic diseases. The 
Cancer Genome Alas (TCGA) database contains 
only 3.6% of African American pancreatic cancers 
compared to 90% for Non-Hispanic Whites (Table 
1). The largest repository of cancer cell lines in the 
world, the American Type Culture Collection 
(ATCC), offers no pancreatic cancer cell lines 
derived from African Americans (Table 1). Data 
from the three centers (Mid-Western, Eastern, and 
Mid-Atlantic) of the NCI-supported Cooperative 
Human Tissue Network (CHTN) report only 8.3% 
African American representation compared to 
88.9% for Non-Hispanic Whites (Table 1). We are 
aware of ongoing GWAS of pancreatic cancer that 
has considerable higher African American 
representation. These include samples from the 
Multiethnic Cohort Study and the Southern 
Community Cohort Study (Park et al., 2018; 
Signorello et al., 2010; Signorello et al., 2005) 



 
 
 
 
 

 
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whereby most pancreatic cancer cases are African 
American (230 cases/5,235 controls), followed by 
Japanese American (181 cases/3,285 controls), 

Non-Hispanic White (132 cases/570 controls), 
Latino (105 cases/ 2,935 controls), and Native 
Hawaiian (43 cases/1,753 controls). 

 

Table 1. Racial representation of biobanks from diseases of the pancreas. 

Biobank Tissue 
type(s) 

Inclusive 
years 

% African 
American 

% White % Other Total in 
biobank 

Reference 

The Cancer 
Genome 
Atlas 

Pancreas 
Cancer, 
Normal 

Pancreas 

2006-2018 3.3 88 8.7 150 (Cancer Genome Atlas 
Research Network. 
Electronic address and 
Cancer Genome Atlas 
Research, 2017) 

American 
Type Culture 
Collection 

Pancreas 
Cancer cell 
lines 

N/A 0 66 33 12 https://www.atcc.org/ 

Prodo Labs Pancreas 2011-2016 11.5 54.9 33.6 226 (Scharp et al., 2019) 

NPOD1 Pancreas 2007-2020 18.3 68.1 13.6 492  

GWAS2 Pancreas 
Cancer 

1993-2014 33.3 19.1 47.6 691 (Park et al., 2018; 
Signorello et al., 2010; 
Signorello et al., 2005) 

CHTN3 Pancreas 
Cancer 

2015-2020 8.3 88.9 2.8 36  

Allegheny 
Hospital 

Pancreas 2013-2017 19.1 61.8 19.1 283  

University of 
Miami 

Pancreas 2013-2017 19.5 54.9 25.6 195  

1Network for Pancreatic Organ Donors with Diabetes 
2Genome Wide Association Studies 
3Coorporative Human Tissue Network 

Health disparities research on pancreas 
transdifferentiation 
We are presently engaged in a prospective study 
on how race affects the ability of normal human 
pancreas to transdifferentiate from an acinar to 
ductal phenotype; considered to be an early 
precursor to the development of pancreatic cancer 
(Storz, 2017). In our study, normal pancreatic 
acinar cells are procured from pancreatic islet 

transplantation centers (Table 1); pancreata are 
from individuals who have consented to organ 
donation. Our study has been ongoing for 3 years, 
and to date we have collected 17, 7 and 14 
pancreas specimens from Non-Hispanic White, 
African American, and Hispanic donors, 
respectively. While the overall percentage of 
specimens from African Americans in our study 
(18.4%), as well as the overall procurement from 



 
 
 
 
 

 
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these transplantation centers (Allegheny Hospital 
19.1% and University of Miami 19.5%, Table 1), 
parallels the percentage of African Americans in 
the USA population (Colby and Ortman, 2015), the 
slow pace of procuring African American 
biospecimens has impacted our work’s progress 
and conclusions from the study. In a 2011 study, 
Bratton, et al., reviewed the impact of race on 
organ donation over the years 1999-2008. They 
report that African American organ donation 
increased over these years to levels that reflect 
minority representation in the USA (Bratton et al., 
2011). 

Historical/Cultural Issues 
A significant body of literature explores medical 
distrust of the research community by African 
Americans (Hughes et al., 2017). Warren, et al., 
reported the barriers to participation among 
African Americans in clinical trials. Thirty-five 
interviews were conducted among national African 
American leaders from historically Black health 
professions schools, Black health professional 
associations, faith leadership centers, and civic 
organizations (Warren RC, 2019). 

Trustworthiness and trust were the top factors that 
determined research participation from the African 
American community; especially for the less 
understood clinical trials (Kennedy et al., 2007). 
Building trustworthiness in the research 
community forms the foundation for trust between 
African Americans and researchers. However, trust 
is unlikely when the research community is not 
trustworthy or when the researchers demonstrate 
no evidence of their trustworthiness (Smirnoff et 
al., 2018). In each instance, trustworthiness is a pre-
condition for sustained trust. The historical 
evidence of bioethics and public health ethics 
violations, specifically related to African Americans 
(Crawley, 2001) is a challenge to sustaining trust. 

African Americans have had regretful experiences 
related to seeking information about 
biospecimens. For example, in 2018, descendent 
family members of the men who were in the U.S. 
Public Health Service Syphilis Study at Tuskegee 
(Syphilis Study) formally requested the 
whereabouts of any Syphilis Study biospecimen 
from the Centers for Disease and Prevention and 
the National Institutes of Health (R.C. Warren, 
personal communication). The request came after 
a paper, published by the Milbank Quarterly, 
indicated that the biospecimen from the Syphilis 
Study existed (Spector-Bagdady and Lombardo, 
2018). Through the Freedom of Information Act, 
the information should have been obtainable. 
While both agencies responded, the information 
was not provided. The NIH “All of Us Project”, to 
collect genetic and biospecimen material from the 
African American population will not be successful 
unless the trustworthiness between the Black 
population and the research community is 
established and sustained. 

Underrepresentation of African Americans in 
Biospecimens 
Previous studies regarding African American 
underrepresentation in biospecimens suggest that 
there are several influential factors including 
mistrust of the medical community, a lack of 
transparency regarding how biospecimens will be 
used, and a lack of knowledge regarding the 
importance of participation. Using a standardized 
phone survey with Detroit area African Americans 
55 years or older, Hagiwara, et al., (Hagiwara et al., 
2014) reported that African Americans were rarely 
asked to participate in biobanking programs. 
Study participants reportedly were not as 
concerned with research exploitation or mistrust of 
medical researchers. When they were concerned, 
these concerns or mistrust did not translate into an 
actual unwillingness to participate in biobanking 
programs. Hagiwara, et al., found that 



 
 
 
 
 

 
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transparency in medical research and biobanking 
programs was a more important predictor of 
African Americans’ willingness to donate 
biospecimens for medical research (Hagiwara et 
al., 2014). 

In a mixed methods study of African Americans in 
Southeast and Southwest Washington, DC, Dash, 
et al., (Dash et al., 2014) also reported that 
“mistrust of the medical community” was not the 
most commonly reported barrier. A lack of 
transparency in and knowledge of how 
biospecimens would be used were cited most 
often. These findings highlight the importance of 
education on biospecimens to increase minority 
participation in biospecimen research (Dash et al., 
2014). 

Patel, et al., (Patel et al., 2018) assessed the impact 
of an educational intervention using video and 
brochures on biospecimen knowledge and 
attitudes using pre- and post-tests. Both average 
knowledge and attitude scores for biospecimen 
donation increased (p < 0.0001) for video and 
brochure conditions post-intervention. Those who 
received the educational video showed a 
significantly greater increase in knowledge pre-to-
post compared to those who did not receive the 
educational brochure. There were significant 
interactions between both interventions for 
attitudes toward biospecimen donation. The 
results demonstrated the feasibility and efficacy of 
a university African American community 
partnership in developing educational tools for 
biospecimen donation (Patel et al., 2018; Rollins et 
al., 2018). 

Rollins, et al., assessed the effectiveness of a 
community-engaged educational approach 
designed to increase clinical research participation 
among racial minorities (Rollins et al., 2018). Pre-
and post-tests assessed changes in participants’ (n 

=60) knowledge, perceptions, and willingness to 
participate in clinical studies and biorepositories 
following a session about clinical research and 
biorepository participation. Statistically significant 
changes in knowledge about joining a clinical 
study and registry or biorepository were observed. 
There was no statistically significant change in 
willingness to participate in clinical research or 
biorepositories. Despite beliefs that participation 
would improve health, early detection, and care 
access, barriers included fear, lack of knowledge, 
historical mistrust of research, and time 
constraints. 

Barrett, et al., reported that fear, mistrust and 
inflexible research protocols were barriers to 
African American recruitment (Barrett et al., 2017). 
Participants suggested that greater recruitment 
could be achieved by enhancing cross-cultural 
skillsets via training opportunities for recruiters, 
increasing greater community engagement 
among researchers, and improving engagement 
between clinic staff and research teams. 

Knowledge, attitudes, and beliefs about 
biobanking and experiences with the donation of 
biospecimens among diverse participants were 
explored by Dang, et al., (Dang et al., 2014). 
Overall, there was a poor knowledge and 
understanding about the use of biospecimens for 
research. Racial and ethnic groups differed in the 
number of factors that were obstacles for 
participation. For African Americans in this study, 
the issue was continuing medical mistrust. Overall 
participants expressed interest and willingness to 
participate in biobanking for altruistic purposes, 
particularly to benefit future generations. However, 
interest was predicated on an expectation that 
requests be accompanied by an explication of 
study sponsorship and ownership, distribution, and 
use of biospecimens in a format that aligned with 
participants’ backgrounds and experiences. While 



 
 
 
 
 

 
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the findings regarding medical mistrust may 
appear contradictory, it can be argued that a lack 
of transparency is related to trustworthiness. 

Increasing Procurement 
Concerted and deliberate actions must be 
undertaken to ensure the representativeness of 
African Americas in pancreatic cancer research. 
Continuing to ignore or failure to respond to this 
issue renders it no less of a concern. Potential 
strategies to include educational campaigns, 
testimonials, statistical messages, and community 
involvement (Reinhard AM, 2020). Evidence points 
to partial success of educational interventions. 
Culturally appropriate messaging in small 
community groups led to improved attitudes and 
beliefs among African Americans. The intervention 
was not effective in changing their beliefs about 
the negative consequences of organ and tissue 
donation and transplantation or increasing actual 
registration behaviors (Jacob Arriola et al., 2019). 
Nonetheless, creating an awareness of this issue, 
engaging the communities of interest in the 
conversation, explaining the dearth of tissue 
donation and its’ impact on developing treatment 
for African Americans might be an important step. 
We concur with the recommendations of 
Regnante, et al., (Regnante et al., 2020): (1) launch 
community-based campaigns designed to raise 
awareness of cancer clinical trials research and 
support recruitment efforts, and (2) provide 
linguistically accessible printed and online 
recruitment materials to patients, patient 
advocates and care partners that are written in 
plain language and in the languages of desired 
participant population. They also propose 
providing transportation, meal vouchers, and 
childcare support to ease barriers and support 
patient participation. 

We believe that considering both the message as 
well as the messenger are likely to be important to 

enhance trustworthiness and to increasing 
biospecimen collection among African Americans. 
To address the issues of trust and trustworthiness, 
we recommend building collaborative partnerships 
that engage the communities in which bio-
specimens are sought. First, it is important to 
engage trusted constituent gatekeeper groups, 
such as African American health professionals, and 
faith and civic leaders to ensure that the factors 
influencing African American underrepresentation 
in biospecimens are fully elucidated. Subsequent 
interactions should be convened by these groups 
with interested majority researchers to forge an 
understanding of the historical precedents 
whereby researchers seek strategic guidance from 
the constituent gatekeeper groups. Secondly, we 
recommend the development of a model 
curriculum that aims to heighten and increase 
participation among the trusted constituent 
gatekeeper groups. Following the implementation 
of a collaboratively developed curriculum, we 
propose measuring the pre-post testing of the 
related interventions. 

CONCLUSIONS AND PROSPECTUS 
Minority representation in biobanks or databases 
at levels that reflect their incidence in the general 
population is essential to biomedical research. 
Historically, African Americans have been less 
willing to participate in biospecimen and organ 
donation programs (Dash et al., 2014; Hagiwara et 
al., 2014; Patel et al., 2018). Reasons for the lack of 
participation include distrust in medical research, 
fear, lack of transparency, and misunderstanding 
of the use and perhaps benefits of biospecimen 
donation (Barrett et al., 2017; Dang et al., 2014; 
Rollins et al., 2018; Warren RC, 2019). The intent of 
this article was to survey a number of biobanks 
and repositories that supplied tissues and 
associated data used by pancreas and pancreatic 
cancer researchers. We conclude that several 



 
 
 
 
 

 
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biobanks contained African American tissues at 
levels that were significantly less than the African 
American population (Table 1) while others 
correspond to the most current census data that 
estimates the African American population in the 
USA at 13.2% (Colby and Ortman, 2015). Although 
the percentage of African American biospecimen 
participation may reflect the census data in many 
of these biobanks, the low number of pancreatic 
biospecimens available to researchers negatively 
affects the pace of disparity research, in particular 
prospective studies. For these reasons, grass root 
efforts to educate the African American 
community on the many benefits of biospecimen 
donation and its impact on biomedical research 
will have a positive influence on research into 
diseases of the pancreas. 

ACKNOWLEDGEMENT 
We thank Ada Golowiejko and Aubrey Coulas for 
their assistance with collecting the procurement 
data. 

This publication was made possible by funding 
from the National Cancer Institute of the National 
Institutes of Health under the Partnership of the 
U54CA233444 (UF) and U54CA233465 (USC). Its 
contents are solely the responsibility of the authors 
and do not necessarily represent the official views 
of the NIH or NCI. The final peer-reviewed 
manuscript is subject to the NIH Public Access 
Policy. CP is supported by a McKnight graduate 
student fellowship. 

Conflicts of interest/Competing 
interests (include appropriate 
disclosures) 
The authors declare no conflict of interest. 

Authors' contributions 
This manuscript was conceived by L.B.H.; R.C.W, 
T.D.S., and V.W.S., contributed to the manuscript 

concept, T.D.S., V.W.S., and C.P. contributed to 
data synthesis. L.B.H. led the writing. All authors 
contributed to writing and editing the manuscript. 

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	INTRODUCTION
	Representation of African American biospecimens for diseases of the pancreas
	Health disparities research on pancreas transdifferentiation
	Historical/Cultural Issues
	Underrepresentation of African Americans in Biospecimens
	Increasing Procurement

	CONCLUSIONS AND PROSPECTUS
	ACKNOWLEDGEMENT
	Conflicts of interest/Competing interests (include appropriate disclosures)
	Authors' contributions

