Strategies to build trustworthiness and increase diversity in colorectal cancer biospecimen research: a multi-phase, multi-site qualitative study

Abstract

Background

Black, Latino, and American Indian individuals are underrepresented in biospecimen research. Obtaining biospecimens from these populations is particularly relevant for understanding, preventing, and treating colorectal cancer and translating those insights to eliminate persistent racial and ethnic inequities in colorectal cancer. The aim of this qualitative study was to identify information needs and culturally appropriate approaches to biorepository recruitment among Black, Latino, and American Indian patients and community members.

Methods

We used a multi-phase, multi-site design that included key informant interviews and focus groups with patients and community members in Los Angeles, Boston, and South Dakota. We analyzed interview data using rapid qualitative analysis and focus group data using reflexive thematic analysis.

Results

We interviewed 10 keys informants with expertise in the recruitment of racially and ethnically diverse participants into biospecimen research and facilitated 21 focus groups with a 101 patients and community members who identified as Black, Latino, or American Indian. We generated six themes from our analyses that we organized into a best practices framework for building trustworthiness and increasing diversity in biospecimen research: (1) cultural responsiveness and inclusivity; (2) community-based partnerships; (3) convenience and accessibility; (4) meaningful and compelling purpose; (5) mindful incentives; and (6) trusted messengers and information sharing.

Discussion

Our findings provide insight into the factors that influence Black, Latino, and American Indian individuals’ decisions to participate in biorepositories. The best practices framework developed from this study presents actionable strategies researchers can adopt to build trustworthiness and increase diversity in colorectal cancer biospecimen research.

Supplementary Information

The online version contains supplementary material available at 10.1007/s12687-025-00855-7.

Introduction

Research utilizing human biospecimens is essential to understanding diseases and advancing prevention, early detection, and treatment (Carrick et al. 2014; Lemke et al. 2022; Luque et al. 2012; Sergi 2022). Despite a high burden of chronic diseases (Wiley et al. 2022), marginalized racial and ethnic groups, including Black, Latino, and American Indian individuals, are underrepresented in biorepositories and translational research outcomes (Aldrighetti et al. 2021; Hindorff et al. 2018; Hohl et al. 2014; Landry et al. 2018; Lemke et al. 2022). Underrepresentation of diverse populations in biospecimen research leads to an incomplete understanding of diseases, reducing the validity and generalizability of findings (Dang et al. 2014; Davis et al. 2019; Lemke et al. 2022). As a result, the precision medicine benefits generated through this research are unjustly distributed and may deepen existing health inequities (Atutornu et al. 2022; Dang et al. 2014; Davis et al. 2019; Hindorff et al. 2018; Hohl et al. 2014; Lemke et al. 2022; Scherr et al. 2019).

Previous studies found that nearly 90% of individuals included in large-scale genomic studies and biorepositories are of European ancestry (Davis et al. 2019; Mills and Rahal 2019). Documented barriers to recruitment of marginalized racial and ethnic groups into biospecimen research include a lack of culturally competent research practices, a lack of biomedical research trustworthiness due to historical and ongoing racism and exploitation, and a lack of knowledge and awareness about the benefits of participation (Baptiste et al. 2022; Haring et al. 2018; Hohl et al. 2014; Lee et al. 2019; Lemke et al. 2022; Rodriguez et al. 2013, 2016).

Obtaining biospecimens from racially and ethnically diverse populations is particularly relevant for understanding, preventing, and treating colorectal cancer (CRC). Despite decreasing incidence and mortality rates, CRC remains the third most prevalent cancer and second leading cause of cancer-related deaths in the U.S. (American Cancer Society 2023; McLeod et al. 2022; Siegel et al. 2021; US Preventive Services Task Force et al. 2021). Racial and ethnic inequities in diagnosis and mortality also persist, as marginalized racial and ethnic groups have more CRC risk factors, are less likely to receive screening, and are more likely to be diagnosed with late-stage CRC (Lansdorp-Vogelaar et al. 2012; McLeod et al. 2022; Sineshaw et al. 2018; US Preventive Services Task Force et al. 2021). Black individuals have the highest CRC incidence and mortality when compared with all racial and ethnic groups in the U.S., followed by American Indian individuals (Carethers 2021; McLeod et al. 2022; Siegel et al. 2021). While the Latino population in the U.S. has lower CRC incidence and mortality rates when compared to the White population, CRC is the second most common cancer among the Latino population (McLeod et al. 2022). Latino individuals are also more likely to be diagnosed with late-stage CRC (McLeod et al. 2022).

Engaging Black, Latino, and Tribal communities in biorepository efforts is critical to ensure we capture the breadth of genetic diversity across the U.S. and meaningfully translate biospecimen research insights to reduce CRC inequities within marginalized communities. Thus, it is imperative to understand barriers and facilitators to participation, and to create strategies to diversify participation. Previous studies have identified barriers and facilitators of participating in biospecimen research, including several studies explicitly focused on biospecimen donation for cancer research (Dang et al. 2014; Erwin et al. 2013; Ewing et al. 2022; Haring et al. 2018; Luque et al. 2012; Rodriguez et al. 2013). However, translating these findings into effective interventions remains an area of high need (Davis et al. 2019; Drake et al. 2017; Fisher et al. 2020).

The aim of this qualitative study was to identify information needs and culturally appropriate approaches to biorepository recruitment among Black, Latino, and American Indian patients and community members across Los Angeles (L.A.), Boston, and South Dakota. This current study builds on a larger, collaborative mixed-method study examining the impact of community-driven and research-informed CRC screening awareness campaigns (STUDY2022000381) and a clinical trial evaluating two mailed home stool-based CRC screening approaches (NCT05714644) focused on Black, Latino, and Tribal communities across the same three study sites. Both of these studies were funded collaboratively through the Stand Up To Cancer Colorectal Cancer Health Equity Dream Team.

Methods

Study design

Our multi-institution research team, comprising investigators from Providence, the University of California Los Angeles, and Massachusetts General Hospital (MGH), conducted a multi-phase, multi-site qualitative study (Fig. 1) that included key informant interviews (Phase 1) followed by focus groups (Phase 2) with patients and community members in L.A., Boston, and South Dakota. Phase 1 was conducted between November 2022 and February 2023, and findings informed the development of the Phase 2 focus group discussion guide. Phase 2 was conducted between May 2023 and April 2024. Institutional Review Board (IRB) approval was obtained at Providence (STUDY2022000553), MGH (2022P002546), and in South Dakota by the Great Plains IRB (23-R-14GP). We followed the Standards for Reporting Qualitative Research reporting guidelines (O’Brien et al. 2014).

Fig. 1.

Multi-phase, multi-site qualitative study design

Phase 1: key informant interviews

Participants

We recruited key informants with experience leading the recruitment of racially and ethnically diverse participants into biospecimen research through initiatives such as All of Us, prospective cohort studies, and population-specific biorepositories. Study personnel sent email invitations to potential participants identified as subject matter experts based on recommendations from the study team, leaders of other Stand Up To Cancer Dream Teams, and literature reviews. We used snowball sampling to identify additional key informants until we had interviewed at least two people for each population (Black, Latino, American Indian). Those who responded that they were interested in participating were scheduled for a 30-minute virtual interview.

Data collection

Two study investigators (E.T.W. and S.J.W.) trained in qualitative research conducted 10 key informant interviews virtually over Zoom. Required elements of informed consent were reviewed prior to the interviews and interviews were audio recorded. We used a structured interview guide (Online Resource 1) designed to explore five areas: (1) key informants’ backgrounds; (2) their approaches to recruitment of racially and ethnically diverse populations, particularly Black, Latino, and American Indian populations; (3) recommendations for engaging with Black, Latino, and/or American Indian populations; (4) lessons learned from working with these populations; and (5) biospecimen collection approaches potential participants were more or less willing to do with any observed differences by racial and ethnic identity.

Data analysis

Audio recordings were transcribed verbatim and reviewed for accuracy by two qualitative analysts on the study team (D.H. and K.L.R.) prior to the start of data analysis. D.H. and K.L.R. collaboratively analyzed interview data using a rapid qualitative analysis method (Hamilton 2013). This method was selected to ensure both analytic rigor and efficiency so that findings could inform the development of the Phase 2 discussion guide. Using a transcript summary template with key interview domains (Online Resource 2), D.H. and K.L.R independently summarized the first three interview transcripts to assess for usability and consistency. After these were established, each analyst independently summarized the remaining seven transcripts and organized summaries into matrices (Online Resource 3) that had transcript summary content arranged by domain (columns) and participant (rows) to facilitate analysis. D.H. and K.L.R. then independently analyzed their matrices to identify themes evident for each domain across participants, with attention to any population-specific themes. Each analyst documented their ideas, thoughts, and reflections in analytic memos throughout the analysis. Analysts held meetings to discuss and refine thematic findings to ensure consensus and analytic rigor. Because we aimed to translate Phase 1 and Phase 2 participants’ insights into actionable, culturally competent strategies to diversify participation in biospecimen research, themes generated in the Phase 1 analysis were organized into a preliminary best practices framework.

Phase 2: patient and community member focus groups

Settings & participants—L.A

Providence study personnel recruited English and Spanish-speaking Black and Latino patients and community members aged 45–74 living in three L.A. zip codes (90008, 90062, 90404) through existing community health action teams (CHATs) developed as part of the umbrella study and the Providence electronic health record (EHR). Sampling combined purposeful and snowball techniques. Recruitment flyers were posted in community settings in and around the above zip codes. Providence patients who lived in L.A. were also identified using a demographic and geographic EHR query and were sent the recruitment flyer by email and through MyChart©.

Interested individuals called the study team, followed a link, or scanned a QR code in the recruitment flyer to complete a REDCap© eligibility questionnaire. The questionnaire asked about their preferred language (English or Spanish), contact information, demographic information, and preferences for participation (e.g., availability, in-person or virtual format, childcare, and transportation needs). We also invited questionnaire respondents to forward the questionnaire link to individuals they knew who were 45 or older and who might be interested in participating in a focus group. Responses were used to confirm eligibility and sort eligible respondents into groups by age and preferred language.

Eligible respondents were emailed the informed consent form, along with focus group dates and times. Study personnel called the participants to review the informed consent form, ask for verbal consent to participate, and schedule 60–90-minute in-person or virtual focus groups.

Settings & participants—Boston and South Dakota

MGH study personnel recruited English and Spanish-speaking Black, Latino, and American Indian patients and community members aged 45–74 in Boston and South Dakota. In Boston, potentially eligible individuals were identified and invited to participate through multiple outreach methods, including mailed letters, physical flyers distributed at MGH CARES community health centers, and platforms such as ResearchMatch (Harris et al. 2012), Rally, and electronic messages that were sent through the health system’s patient portal (Patient Gateway). Each outreach material, whether electronic or physical, included information about the study criteria and a QR code that linked directly to a REDCap© eligibility questionnaire. Interested individuals were asked to complete the questionnaire to confirm eligibility, provide demographic information, provide their preferred mode of communication, and to indicate which dates and times worked best for a focus group. Eligible respondents were emailed a patient information sheet detailing study information and focus group dates and times. Study personnel called the participants to review the informed consent form, ask for verbal consent to participate, and schedule 60–90-minute virtual focus groups.

In South Dakota, recruitment focused on two Tribal communities. The Great Plains Tribal Leaders Health Board (GPTLHB) staff collaborated with community leaders and the Tribal communities’ health centers to promote colorectal cancer screening and disseminate study related communications through trusted sources. GPTLHB staff provided physical flyers that could be posted at local centers and frequently visited places in one of the Tribal communities. They utilized social media outreach via Facebook to post flyers to reach individuals in more remote areas with limited means of communication options in the other Tribal community. In South Dakota, interested individuals contacted the research staff via phone to complete the REDCap© eligibility questionnaire, with their responses being manually entered in the database by study personnel. At both sites, study personnel asked for verbal consent via phone. Upon consent, participants were then provided with detailed study information and scheduled for a 60–90-minute virtual focus group.

Data collection

A total of 21 focus groups were conducted by trained facilitators on the study team. There was a second study team member present for each focus group to take notes and provide logistical support. Seven focus groups were conducted in L.A. Four of these were conducted in-person in community settings, three of which were facilitated in Spanish. The other three L.A. focus groups were conducted virtually using Microsoft Teams. All 14 focus groups in Boston (9 focus groups) and South Dakota (5 focus groups) were conducted virtually using Zoom. One focus group in Boston was facilitated in Spanish.

At the beginning of each focus group, we reviewed elements of informed consent, encouraged participants to maintain confidentiality by refraining from discussing focus group details outside of the session, and asked for verbal consent to begin audio recording the focus group. The same semi-structured discussion guide (Online Resource 4) was used across all sites. To ensure a common understanding among participants, the facilitators began the focus groups by asking questions about their knowledge of biorepositories and biospecimens. Facilitators then provided a standardized explanation about biorepositories and biospecimens to establish a shared baseline understanding prior to asking questions about barriers and facilitators to participation in biospecimen research and recruitment communication strategies. Participants received a $50 gift card for their time, which was sent either electronically or physically depending on participant preference.

Data analysis

Audio recordings were transcribed verbatim and reviewed for accuracy by qualitative analysts on the study team (K.L.R., S.C., B.N.-C., and J.R.) prior to the start of data analysis. Providence analysts (K.L.R. and S.C.) analyzed focus group data from L.A. using Atlas.ti Web (Version 5.21.2) and MGH analysts (B.N.-C. and J.R.) analyzed focus group data from Boston and South Dakota using NVivo (Version 14). We used Braun and Clarke’s 6-phase reflexive thematic analysis process (Braun and Clarke 2022) to inductively generate themes (Table 1). To ensure rigor, analysts maintained audit trails and engaged in reflexive analytic memoing to track their thoughts, reflections, and decisions throughout the analytic process. After generating themes for each of the respective study sites, Providence and MGH analysts participated in collaborative analytic meetings to discuss, reflect on, and finalize cross-site themes. We then integrated and synthesized Phase 1 and Phase 2 thematic findings to finalize the preliminary best practices framework initially developed in Phase 1.

Table 1.

Phases of reflexive thematic analysis

Phase	Description of Process
1. Data Familiarization	S.C. and K.L.R. reviewed L.A. transcripts for accuracy and B.N.-C. and J.R. reviewed Boston and South Dakota transcripts for accuracy. Analysts then immersed themselves in respective datasets by reading and re-reading transcripts and documented initial thoughts in reflexive analytic memos.
2. Data Coding	Analysts coded respective datasets independently in ATLAS.ti Web (Providence) and NVivo (MGH). Codes were discussed and refined by Providence and MGH analysts separately.
3. Initial Theme Generation	Analysts generated initial themes for respective datasets by grouping codes with a shared concept and collated data extracts for each initial theme.
4. Theme Development & Review	Analysts reviewed themes for respective datasets to assess the fit of themes with coded data extracts for.
5. Theme Refining, Defining, & Naming	Providence and MGH analysts met to collaboratively discuss and refine themes, noting cross-site themes and any population-specific findings. Analytic discussion was aided by preliminary best practices framework visualization and led to refinement of themes. K.L.R. refined the preliminary best practices framework to organize thematic findings for write-up and presentation of findings.
6. Writing Up	K.L.R., D.H., B.N.-C., and J.R. produced the first draft of the manuscript. All team members contributed to and critically reviewed the manuscript.

Results

Phase 1 participant characteristics

We conducted 10 key informant interviews with participants with expertise in biorepository recruitment. Participants held expertise from a range of settings, including nonprofits, governmental agencies, and academic medical centers with biospecimen research projects spanning national, regional, and local geographies. Most participants (90%) had a specific focus on the recruitment of Black and/or Latino and/or American Indian populations.

Phase 2 participant characteristics

We conducted 21 focus groups with a total of 101 participants across three study sites: L.A. (7 focus groups, n = 57), Boston (9 focus groups, n = 23), and South Dakota (5 focus groups, n = 21). Participant characteristics reported in the eligibility questionnaire are described in Table 2.

Table 2.

Participant characteristics by site

Characteristic	L.A. (n = 57)	Boston (n = 23)	South Dakota (n = 21)	Total (N = 101)
	No. (%)	No. (%)	No. (%)	No. (%)
Age
45–55 years	14 (24.5)	13 (56.5)	8 (38.1)	35 (34.7)
56–66 years	14 (24.5)	5 (21.7)	9 (42.9)	28 (27.7)
67–74 years	16 (28.0)	4 (17.4)	4 (19.0)	24 (23.8)
75 years or older	5 (8.8)	0	0	5 (5.0)
Unknown	8 (14.0)	1 (4.3)	0	9 (8.9)
Racial Identity
American Indian/Alaska Native	0	0	20 (95.2)	20 (19.8)
Black or African American	22 (38.6)	13 (56.5)	0	35 (34.7)
White	0	6 (26.1)	0	6 (5.9)
More than one race	0	3 (13.0)	1 (4.8)	4 (4.0)
Unknown	35 (61.4)	1 (4.3)	0	36 (35.6)
Ethnic Identity
Hispanic or Latino	27 (47.4)	11 (47.8)	1 (4.8)	39 (38.6)
Not Hispanic or Latino	22 (38.6)	12 (52.2)	20 (95.2)	54 (53.5)
Unknown	8 (14.0)	0	0	8 (7.9)
Language
English	24 (42.1)	19 (82.6)	21 (100)	64 (63.4)
Spanish	33 (57.9)	4 (17.4)	0	37 (36.6)

Eight participants in L.A. did not complete the questionnaire. Their responses are categorized as “Unknown.” L.A. participants were not asked to provide both racial identity and ethnic identity. Therefore, all participants who responded that they identify as Hispanic or Latino are categorized as “Unknown” for racial identity

Thematic findings

We generated six overarching themes from Phase 1 and Phase 2 analyses and organized them into a best practices framework for building trustworthiness and increasing diversity in biospecimen research (Fig. 2): (1) cultural responsiveness and inclusivity; (2) community-based partnerships; (3) convenience and accessibility; (4) meaningful and compelling purpose; (5) mindful incentives; and (6) trusted messengers and information sharing. Each of these are described below and when pertinent, population-specific strategies are noted.

Fig. 2.

Best practices framework for culturally competent biospecimen research. Note: We used “Joy” as a pseudonym for a focus group participant mentioned in the illustrative quote under Trusted Messengers & Information Sharing.

Cultural responsiveness and inclusivity

For biospecimen research to be truly inclusive and equitable, one key informant commented that “you should make the mission of diversity and inclusion central to the entire project, and then you can adapt your approaches for the different communities that you’re working with.” This requires a deep understanding of and responsiveness to cultural context. This includes consideration of language and literacy level and the socioeconomic and political contexts that may shape potential participants’ perspectives on researchers, and science more broadly.

Participants asserted that recognizing and acknowledging historical racism in biomedical research is critical to building the trustworthiness of biospecimen research and researchers. They mentioned Henrietta Lacks, the Tuskegee Syphilis Study, and the weaponization of blood against Tribal communities as key experiences that shape their perspective on and interest in biospecimen research participation.

Are they going to use me as they did, I wasn’t here, but back in the days when they used Black men or Black people…[they] did all kinds of things to experiment and stuff. [L.A. focus group participant]

Well, see, I think you guys have gotta do your homework. You have history against you. Let’s face it, I mean, when we look at the Tuskegee experiments, we look at the testing in the tunnel here, you guys have always been the Boogie Man, the bad guy. [Boston focus group participant]

So, a lot of Tribes do not participate in anything to do with blood and research and tissues because it’s already caused great harm and division…I bring it up strongly because I want researchers to know and understand just how challenging it is and difficult for somebody who’s Indigenous or multiracial like me to come forward and offer blood or tissue. [Boston focus group participant]

It is a responsibility of researchers to have an approach to recruitment that acknowledges the context of recruitment, including the ways that research studies have mistreated, and brutally so at times, populations that are underrepresented in biomedical research and being able to talk about that as a fundamental part of the program. [Key informant]

Participants also discussed the impact of racism and discrimination in the health system on their potential participation. Being dismissed by health care providers, whether experienced by themselves, family members, friends, or neighbors, decreases the trustworthiness of the system. As one participant stated, “Something simple, listening to symptoms and actually going the extra mile to say, okay, this person’s reporting this, let’s look into that instead of dismissing it—that simple thing will build trust” [Boston focus group participant].

For Tribal communities, there are other specific contextual factors that must be understood and recognized in the process of building trustworthy biospecimen research projects. Addressing biospecimen collection, use, storage, and disposal requires cultural understanding of the connection between the specimen and the body. For example, for members of Dakota’s Tribal communities, “blood drawn from their bodies is a part of their bodies” and therefore “has to be respected throughout the life course of its handling” [Key informant].

Participants commented on the importance of building diverse research teams, with staff who have shared lived experiences and identities with target communities. Some Black participants in Boston focus groups indicated that having researchers who “look like me” would play a role in their decision to participate: “You truthfully know what’s happened to us, so if you’re asking me to do this, then there must be some validity to that.” Spanish-speaking participants reported that racial and ethnic concordance would not affect their decision to participate. One key informant shared that their community health center partner hired interviewers from the local community who held shared experiences with potential participants, which may build the trustworthiness of the study.

Regarding staff training and knowledge, one Boston focus group participant commented: “What are their backgrounds? Are they understanding of culture and community and are they engaged? Do they understand the culture?” Participants asserted the importance of having staff that are educated on the history of racism in biomedical research, and health care broadly, to facilitate honest and transparent communication and build trustworthiness in their studies. For those aiming to recruit American Indian participants specifically, understanding Indigenous data sovereignty and its cultural and political context is important. A key informant also underscored the role of thorough training in study procedures to support recruitment: “Having [research staff] become more comfortable in understanding how the collection process works can make it easier in the pitch to a participant and empower participants to feel comfortable enough to do those collections.”

Community-based partnerships

Developing bi-directional relationships with and/or strengthening existing community-based and organizational partnerships are important pathways that participants identified for connecting with target communities and building trustworthiness in biospecimen research. Partnerships may include national, regional, or local medical associations, minority-serving media, library systems, community health centers, and local and state-level elected officials. For Black communities specifically, partnerships may include Black Greek-letter organizations and faith-based leaders. For Tribal communities, early, intentional, and meaningful engagement with Tribal elders and Tribal IRBs in the design and development of biorepositories and biospecimen research projects are central to driving equitable, ethical, and culturally appropriate recruitment.

Participants also suggested the early engagement of target communities in the research design to identify community-specific best practices. One participant recommended using focus groups at the beginning of study conceptualization.

I think unless you do a focus group with that population to identify, what do you need, what brings you to a program, what would make this doable for you, what would make this accessible for you, and you have those focus groups where people are actually giving you that input when you’re designing your intervention…they’re going to be able to give you that additional information that you need to make this work, to make this effective. [Boston focus group participant]

Establishing community advisory boards that are compensated and represent the target communities is another strategy key informants suggested to build trustworthiness through community-informed research design. Community advisory boards can advise and provide feedback on recruitment strategies and study procedures to ensure that they are culturally appropriate. One key informant shared that their study’s community advisory board “helped us to better understand how to do the outreach.”

For Tribal communities, centering Tribal autonomy, expertise, and capacity to lead their own research is critical to supporting Tribal communities’ engagement “in the research on their own terms” [Key informant]. Key informants also highlighted the importance of recognizing differences in timelines for Tribal IRBs and non-Tribal IRBs and being attentive to Tribal data sharing and biospecimen use agreements.

Convenience and accessibility

Participants emphasized the importance of reducing participant burden to effectively recruit into biospecimen research. This includes covering costs of participation: “I want lunch paid for. I want gas paid for. I want parking paid for” [L.A. focus group participant]. Convenience is another factor that is considered in decisions to participate. As one Boston focus group participant commented, “If I’m volunteering my time to do something…then it has to be set up in such a way that there’s some convenience to me to be able to do it.” Transportation can be a barrier for those without cars in rural Tribal communities. Mobile and home-based biospecimen collection can reduce this burden. Other participants encouraged the recruitment and engagement of potential participants in health care settings where they receive their care. For example, coupling a blood draw for research with a blood draw for their regular appointment, or collecting tissue during an already scheduled procedure, can increase convenience and the likelihood of participation.

Another strategy suggested by participants to decrease burden is to consolidate biospecimen collection into one visit rather than spread collections over multiple study visits: “There is more burden in that one visit, but less touch points” [Key informant]. Some participants encouraged a flexible approach to biospecimen collection whenever possible. Some participants may be reluctant to donate biospecimens if collection procedures are perceived as too invasive or have an “ick” factor, like stool. They may also be inconvenienced if asked to go to a lab or clinic for a blood draw and they do not have an existing appointment. If home-based collection is feasible for the study, “giving them a choice” [L.A. focus group participant] may facilitate participation.

Meaningful and compelling purpose

Participants suggested that altruism is an important driver of biospecimen research participation, particularly when participation may positively impact members of their communities in the future or “save lives.” As one Boston focus group participant shared, “there’s got to be some measurable good,” rather than making “some international conglomerate company richer off of me.” An American Indian participant situated their altruistic motivation in the context of racism and discrimination:

The test may come through as to how we’re surviving what we’ve been through. And then maybe we’ll find out how well we survived. And if that’s going to help generations to come. [South Dakota focus group participant]

Some participants emphasized the importance of representation in biospecimen research to ensure equitable precision medicine.

As an African American, I want us to be represented, I want us to be saved. If it’s something different that they have to do to save us, I want them to know that. [L.A. focus group participant]

Others suggested that learning more about their own health or their community’s health would facilitate their participation. One L.A. focus group participant shared that they would be “interested more than anything in the information and education that they can give me as a person.” This same participant and others underscored the importance of researchers sharing these personalized results and providing “assistance” to navigate treatment if needed.

Mindful incentives

Participants reported that incentives can motivate participation in biospecimen research, and they encouraged mindfulness in the selection of incentives. For example, in Tribal communities, there are often no stores around, so cash or checks may be more appropriate and responsive than a gift card to a grocery store chain that is not geographically accessible. One key informant stated, “There’s not like Walmart, there’s not like Sam’s Club or Starbucks,” so providing checks allows participants from Tribal communities to “use them as they see fit.” Some participants suggested that food resources, transportation vouchers, cash cards, and gas cards may be more beneficial than standard Amazon gift cards. Participants also highlighted the importance of quickly receiving their incentive, and ensuring the incentive’s value is “commensurate with the request” [L.A. focus group participant]. One L.A. focus group participant encouraged mindfulness around how to talk about incentives. Instead of hearing “I’m gonna give you some money for this,” researchers should offer the incentive out of recognition of participants’ “inconvenience,” “support,” or “cooperation.”

Trusted messengers and information sharing

Participants emphasized the role of trusted messengers in biospecimen research recruitment. As one Boston focus group participant shared, “Your messenger is going to be really important, who’s delivering that message, who’s telling you about it.” For some participants, trusted health care providers legitimize studies when they introduce them directly. One L.A. focus group participant commented, “I’d be more inclined if it were someone from my doctor’s office or my medical group rather than, say, Pookie, on the corner.” Other participants highlighted the key role trusted community members and entities can play in building knowledge about biospecimen research and introducing studies to potential participants. Some of these trusted messengers include Tribal elders, clinics, churches, and Black sororities and fraternities. For others, learning about biospecimen research from a friend or family member may influence a decision to participate. In situations where researchers may directly engage with communities, participants stressed the importance of shared racial and ethnic identities, which may make potential participants “a little more comfortable” and establish the “validity” of the study [Boston focus group participant]. For those researchers who may not share cultural identities or live near or in the community, it is imperative that they really “know their audience” [L.A. focus group participant] and are “genuinely concerned” [Boston focus group participant] about and respectful of the community.

Participants underscored the importance of “honest,” comprehensive information about the research study, including a detailed description of its purpose, benefits and consequences of participation, logistical considerations like cost and accessibility, and procedures for obtaining, storing, protecting, and discarding biospecimens.

What is the end result for collecting all the biospecimens from the people? What would it be used for? What type of research would come out of this? Would it be beneficial for the people, or would it be used for insurance companies and other entities to not look in our direction? What is exactly going to happen with the specimens and how they interpret [them]? Are there going to be priorities for medical and health coming out of this? [South Dakota focus group participant]

How will that specimen be used? What’s for? How far reaching is it and how it can help or not help and who it would help or not help. So, to me, it’s a very big thing and I personally don’t think that the scientists and physicians have been very good about clarifying that. [L.A. focus group participant]

Participants also indicated that they would want to know why specific underrepresented communities may be targeted for recruitment and how it may impact them. For example, one participant recommended the following explanation:

These studies have been done, but they’ve been done on this particular population, and that doesn’t represent you. So, we’re now taking the results from this particular population and applying it to you. And what we’re looking to do is have information that truly represents you more closely…so that we’re not using data that’s not reflective of your population to provide you with medication. Make it applicable and personal and clear why this makes sense in a greater sense. [Boston focus group participant]

While some participants did suggest the type of biospecimen sample required for participation may influence their decision to participate (e.g., stool, cerebrospinal fluid, other specimens that require invasive collection procedures), a more central concern was knowing up front what kind of biospecimen was required, how it would be collected, and the level of invasiveness and possible pain associated with that collection. Some participants raised concerns around the safety of participation, specifically interactions with medications or current medical conditions. A Boston focus group participant stated that “some of us have health conditions are on meds and everything,” so having clear information on the safety of participation is essential.

Participants also want to know about their control over the future use of their biospecimens, with some expressing concern about their consent for future use and whether that research aligns with their values.

Also, I’d be curious about how long the sample’s going to be available – you know, is it they’re going to keep it alive indefinitely? Is – are they going to grow it? What are they going to do with it? You read about cloning animals and things like that, and I’m not real keen into that, so I wouldn’t want my sample – I wouldn’t want to have a goat look like me later in life. [Boston focus group participant]

Participants want information about their data protections and privacy, including government, employer, and insurance access to confidential information. One L.A. focus group participant shared that “misuse [of data] may be on someone’s mind” and a key informant indicated the importance of talking about “data safety and storage…how you are going to protect people’s information.”

Participants indicated that providing information about the researchers leading the research, specifically their credentials and backgrounds, and the institutions with research oversight will contribute to transparency and trust. As one L.A. focus group participant shared, “I would want to know if it’s governed by the CMS Joint Commission, Department of Health Services NIH…for it to be a credible study, they should be able to at least tell you the NIH number.” Additionally, participants discussed the importance of being explicit about their research protections, the ethical conduct of research, and the measures to ensure potential participants have clarity around the study and nature of participation.

So, I think researchers should emphasize more about specifically the IRB, and, you know, more things that are being done now versus what happened with the [Henrietta] Lacks situation and how there are checks and balances along the way. [Boston focus group participant]

Participants asserted that researcher attention to language, reading levels, and jargon are crucial to ensure potential participant information needs are met. In addition to the appropriate translation of research materials, some participants suggested having a language interpreter available. Participants noted the importance of clear, lay terms when communicating about biospecimen research. As one Spanish-speaking L.A. focus group participant shared, “It’s one thing when someone speaks to you in English, but another thing is when you’re spoken to in the technical English of a doctor.”

For some, terminology used in biospecimen research was unfamiliar and laden with sinister “science fiction associations” [Boston focus group participant]. For example, the term biorepository conjures thoughts of “zombies,” “clones,” and “Resident Evil.” The term biorepository was also confused with suppository by some participants who thought it had to do with constipation and bowels. A L.A. focus group participant shared that the term biospecimen, though generally more familiar than biorepository, “sounds like something from…another world.” Biobank was more preferred and familiar than biorepository.

Participants provided several recommendations to address these concerns. One L.A. focus group participant stated, “Take that B-I-O out of there.” More broadly, participants recommended that communication about biospecimen research be “clear, concise, and straight to the point” and minimize the use of “medical terminology” [L.A. focus group participant]. For example, rather than using biospecimen, “you have to be point blank and say urine, blood, you know, or whatever” [L.A. focus group participant].

While trusted messengers and comprehensive information are essential, participants indicated a need for tailored and community-informed recruitment practices. When discussing tailored messaging, one participant shared:

I think messaging to communities of color…we are not monolithic, we’re very multicultural, so different messages are going to resonate with different populations, and I think it’s important for us to be able to understand what those populations are, what are their values and their core belief systems and having a representative from that community also deliver that. [Boston focus group participant]

Participants also shared a range of outreach and communication strategies, highlighting the need for a multimodal approach to meet potential participants where they are. For example, some participants suggested presentations and small groups facilitated by trusted messengers, while others suggested community events. Many participants preferred receiving information through their patient portals, and some suggested visual communication strategies, like informational videos.

Participants emphasized the importance of researchers following up about personalized results (e.g., detection of a genetic risk) and sharing overarching study results at its conclusion. Speaking from experience, one L.A. focus group participant commented that they “really appreciated getting some feedback because otherwise you just feel like, OK, you’re helping somebody, but is it really going to help you or is it going to help anybody even.” Another participant suggested the research team share a website that shows the impact of the study. Various communication channels were recommended to maintain engagement, including electronic newsletters, direct phone calls or e-mails, mailers, town halls, social media, and study dashboards. While these recommendations are relevant to studies of any length, key informants shared the importance of regular research team communications to engage and sustain long-term relationships with participants in longitudinal or future studies.

Discussion

Our findings provide insight into the spectrum of factors that may influence decisions to participate in biospecimen research among marginalized and underrepresented racial and ethnic groups. Participants emphasized trustworthiness in biospecimen research and shared strategies researchers can implement to build trustworthiness (Fig. 3).

Fig. 3.

Actionable strategies to build trustworthiness in biospecimen research

Cultural responsiveness and inclusivity were identified as critical components of trustworthy biospecimen research, requiring researchers to demonstrate deep understanding of cultural contextual factors that frame biospecimen research and may shape decisions to participate. Our findings align with prior research highlighting mistrust of biomedical research (Dang et al. 2014; Davis et al. 2019; Morris et al. 2024; Toro et al. 2025). Researcher awareness of the historical and ongoing racism and mistreatment in biomedical research and health care is crucial and can be supported through continuing cultural competence and responsiveness training for research staff (Morris et al. 2024). The explicit acknowledgement of these contextual factors through culturally competent research design, a racially and ethnically diverse research team, and transparent communication is foundational to building trustworthiness in biospecimen research (Atutornu et al. 2022; Dang et al. 2014; Dash et al. 2014; Davis et al. 2019; Haring et al. 2018; Hindorff et al. 2018; Lemke et al. 2022; Morris et al. 2024; Scherr et al. 2019; Toro et al. 2025).

Participants also discussed the need for bi-directional community-based partnerships in biospecimen research. Developing and sustaining these partnerships is an important pathway for building trust and engaging in meaningful collaboration to ensure research design and recruitment are culturally appropriate (Atutornu et al. 2022; Dang et al. 2014; Davis et al. 2019; Haring et al. 2018; Hindorff et al. 2018; Lemke et al. 2022; Morris et al. 2024; Scherr et al. 2019). Community advisory boards and community-based participatory research (CBPR) approaches are two strategies to meaningfully engage underrepresented communities (Dang et al. 2014; Hindorff et al. 2018; Haring et al. 2018; Hohl et al. 2014; Luque et al. 2012; Morris et al. 2024). Reporting on their comparative findings from three participatory formative studies (Erwin et al. 2013; Luque et al. 2012; Rodriguez et al. 2013) in Sacramento, Buffalo/Niagara Falls, and Tampa Bay, Dang et al. (2014) underscored the feasibility of and imperative for CBPR or other community-engaged research approaches to develop community-responsive biospecimen research practices that reflect the unique context of each community. Findings from these studies laid the foundation for participatory biospecimen research educational tool development in Buffalo/Niagara Falls and Tampa Bay, an approach that supported co-learning and generated tailored tools for each location (Meade et al. 2015).

Research partnerships and collaborations with Tribal communities need to center Tribal autonomy. Historically, government-sponsored biospecimen research initiatives have created unrestricted access to population-level data, leading to commodification and billions in profits for the biomedical and genealogical testing companies (Fox 2020). The innovations driving these profits are often inequitably distributed, not benefiting the populations who donated biospecimens. Consequently, Tribal communities remain wary of participation in biorepositories. As one key informant shared, building trust alone is not enough:

It’s about return of benefit and the blockade of exploitation. So, if the money comes from Black communities, or Native communities, or Latino communities, we want that benefit now, not 50 years from now.

There is a fundamental incongruence between the altruistic intentions of biospecimen research and the profit-driven goals of companies generating medical innovations using insights from that research. To advance diversity and equity in biospecimen research, it is critical to establish mechanisms at the start of studies to ensure Tribal and other underrepresented communities have control over their data and receive direct and timely benefits from their contributions (Fox 2020; Haring et al. 2018; Lemke et al. 2022).

As with prior studies, participants discussed logistical and financial concerns related to biospecimen research participation (Dang et al. 2014; Davis et al. 2019; Morris et al. 2024; Rodriguez et al. 2013). Transportation can be a barrier for some, and food, gas, and parking costs, are factors that may influence decisions to participate. Mobile or home-based collection and financial compensation for study-related personal expenses are strategies that can mitigate these challenges for potential participants (Davis et al. 2019; Morris et al. 2024; Rodriguez et al. 2016; Scherr et al. 2019). Potential participants may also have concerns about the time commitment required to participate (Dang et al. 2014). Consolidating biospecimen collections and pairing them with existing health care visits and/or procedures can reduce this burden and support participation.

Participants indicated the importance of a meaningful and compelling research purpose to motivate their participation. Consistent with previous studies, participants cited altruism as a key driver of participation (Dang et al. 2014; Davis et al. 2019; Erwin et al. 2013; Hohl et al. 2014; Luque et al. 2012; Morris et al. 2024; Rodriguez et al. 2013; Scherr et al. 2019; Toro et al. 2025). Some participants may be compelled to participate because they believe in the importance of their community’s representation in biospecimen research, while others are motivated by the opportunity to learn about their own health and that of their community. Prior studies that explored perceptions of and attitudes toward biospecimen research among racially and ethnically diverse communities found greater willingness to donate biospecimens for cancer-related research, particularly for participants who had a family member or friend with cancer (Ewing et al. 2022; Rodriguez et al. 2016; Sinclair et al. 2021). Therefore, the purpose and potential benefits and consequences of CRC biospecimen research should be clear up-front to support informed decisions to participate.

Previous studies have found that financial incentives can motivate participation, with some potential participants perceiving them as an added benefit (Erwin et al. 2013; Hohl et al. 2014; Luque et al. 2012; Scherr et al. 2019). Morris et al. (2024) found that biospecimen studies without financial incentives were less likely to enroll Black individuals with cancer. Participants in our study also suggested that incentives can motivate participation, though they are unlikely to be the only factor informing their decision. They emphasized mindfulness when determining what kind of incentive to provide study participants. The most meaningful incentives will reflect the context of study participants’ lives. For example, Tribal communities may not have ready to access to big box stores, so providing cash or checks may be more meaningful.

Finally, participants highlighted the importance of trusted messengers, comprehensive information, and multimodal communication strategies in biorepository recruitment (Davis et al. 2019; Hohl et al. 2014; Luque, Quinn, Montel-Ishino, Arevalo, and Bynum 2012; Morris et al. 2024). Some indicated they prefer to hear about biospecimen research opportunities from their trusted medical provider. To support providers with these discussions, researchers should ensure they have access to culturally appropriate information and materials (Davis et al. 2019). Other participants prefer to hear about biospecimen research opportunities from trusted family, friends, and community members. Building and sustaining community partnerships is critical for effective community-based outreach and recruitment (Atutornu et al. 2022; Davis et al. 2019; Hindorff et al. 2018; Morris et al. 2024; Rodriguez et al. 2016; Scherr et al. 2019).

Consistent with previous studies, a lack of understanding and knowledge about biospecimen research, privacy, and potential misuse of data were cited as concerns, and for some, barriers to participation (Davis et al. 2019; Hohl et al. 2014; Luque, Quinn, Montel-Ishino, Arevalo, and Bynum 2012; Morris et al. 2024; Scherr et al. 2019; Rodriguez et al. 2013; Rodriguez et al. 2016; Toro et al. 2025). Participants indicated a need for more transparent and comprehensive information about biospecimen research to increase their understanding of its purpose, the requirements of participation, and participant protections so they can make informed decisions (Dang et al. 2014; Dash et al. 2014; Erwin et al. 2013; Rodriguez et al. 2013). They also asserted the importance of providing clear information about researchers’ credentials and the institutions overseeing the research, a finding supported by prior research with Black and American Indian participants who underscored research credibility as a facilitator of biospecimen research participation (Erwin et al. 2013; Sinclair et al. 2021). As with other studies, participants emphasized the need for accessible, jargon-less communication available in participants’ first or preferred language and distributed through multiple communication channels (Dang et al. 2014; Davis et al. 2019; Erwin et al. 2013; Luque et al. 2012; Haring et al. 2018; Rodriguez et al. 2013; Scherr et al. 2019; Toro et al. 2025). CBPR, as discussed earlier, can be leveraged to develop effective, culturally responsive materials and communication strategies.

Limitations

We recognize that our findings are not representative of all perspectives on culturally competent biospecimen research practices, therefore they may not be transferable to all contexts. To address this limitation, we provided rich descriptions of our sample and findings for others to determine applicability to their specific context. Member checks were not feasible for this study; however, we maintained a thorough audit trail, engaged in reflexive analytic memoing, and held peer debriefs. These practices strengthen the rigor and credibility of our analysis. Future research could seek feedback on the best practices framework to ensure its validity.

Despite these limitations, there are several notable strengths of our study. First, including key informants, patients, and community members supported a layered approach to data collection, analysis, and synthesis that allowed us to capture the nuances of culturally competent biospecimen research practices. We also used both in-person and virtual focus group formats, conducted focus groups in English and Spanish, and recruited Black, Latino, and American Indian participants to ensure inclusivity. To our knowledge, this qualitative study is unique in its collaborative, multi-phase, multi-site, multi-region design. Our work confirms and extends findings from earlier formative research on this topic by including distinctive U.S. regions, and therefore, the unique cultural contexts of Black, Latino, and American Indian individuals residing in those regions. Finally, we offer a comprehensive and actionable best practices framework that can be adopted by researchers to increase diversity in biospecimen research.

Conclusion

Racial and ethnic inequities in CRC persist in the U.S. Biospecimen research can play a key role in the elimination of these inequities by deepening our understanding of CRC and advancing CRC prevention and treatment. However, this will require researchers to prioritize diversity and effectively recruit from underrepresented racial and ethnic populations that are inequitably impacted by CRC. In this study, we identified information needs and culturally competent biospecimen research practices that can support engagement with and recruitment of Black, Latino, and American Indian patients and community members. Participants emphasized the importance of trustworthiness in biospecimen research and called on researchers to demonstrate that trustworthiness. The best practices framework we outlined in this paper presents actionable strategies researchers can adopt to build trustworthiness and increase diversity in CRC biospecimen research.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

S.J.W., E.T.W., S.B., K.S., D.A.D., F.P.M., J.S.H., J.A.R., A.R. and K.L.R. were involved in the conceptualization and design of this study. Data collection was conducted by S.J.W., E.T.W., K.L.R., M.C., G.J., B.N.-C., and A.R. Data analysis and synthesis was performed by K.L.R., D.H., B.N.-C., J.R., S.C. and A.R. Project administration was overseen by S.J.W., E.T.W., J.A.R., and D.H. The first draft of the manuscript was written by K.L.R., D.H., B. N.-C., and J.R. and all authors commented on subsequent versions of the manuscript. All authors read and approved the final manuscript.

Funding

This work was supported by Stand Up To Cancer, a division of the Entertainment Industry Foundation.

Data availability

De-identified data are available upon reasonable request with documented institutional review board request.

Declarations

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Providence IRB (STUDY2022000553), Massachusetts General Hospital IRB (2022P002546), and the Great Plains IRB (23-R-14GP).

Consent to participate

Informed consent was obtained from all individual participants in this study.

Competing interests

The authors declare no competing interests.