Patients’ views on HCC biospecimen research: Understanding the role of race and culture through interviews

Background:

HCC is a leading cause of cancer-related mortality; there are significant racial and ethnic disparities in HCC risk and survival. Our knowledge regarding whether molecular and genetic factors contribute to these observed differences is limited by scarcity of biospecimens, which are especially scarce in minority populations. Because biospecimens are not needed for HCC diagnosis or treatment, patients are less likely to provide biospecimens solely for research purposes.

Methods:

We identified participants, n = 32, from an ongoing prospective cohort study. Using semi-structured interviews, we examined perceptions of providing biospecimens for research to identify factors that motivate and hinder their willingness to donate.

Results:

Directed content analysis resulted in 6 themes, including reported experiences of (1) support or suspicion in donating biospecimens; (2) desire to help others or themselves; (3) inconvenience, discomfort, and concerns about privacy or recovery as hindrances to donating; (4) recommendations for health care researchers; (5) preferences for biospecimen donation; and (6) the influence of race, culture, and religion in donating biospecimens. Patients reported being least willing to donate specimens that required more invasive procedures and recovery, namely, liver tissue. Patients reported being more likely to donate if the data collection was convenient, resulted from discarded tissue, or was instituted as part of a broad opt-in consent approach, with assurances as to confidentiality and prosocial benefit. Participants expressed mixed views about whether race and culture influence people’s willingness to donate biospecimens.

Conclusions:

Specific recommendations to increase the likelihood of donation include providing patients with educational materials addressing the benefits of donation and the concerns about confidentiality and data usage, making donation convenient, and adopting a broad consent bio-banking policy.

INTRODUCTION

HCC, a leading cause of cancer-related mortality, disproportionately affects racial and ethnic minorities. In the US, incidence rates are highest in American Indian/Alaskan Native individuals (11.4%), then Hispanic (9.8%), Asian/Pacific Islander (9.1%), non-Hispanic Black (8.1%), and non-Hispanic White individuals (4.6%).1 There are significant racial disparities in HCC survival rates.2–7 Black patients are more often diagnosed with late-stage cancer and consistently have the lowest survival.2,6,8 Moreover, there are significant intra-group survival differences. Haitian-born Black patients have significantly lower survival than other Black patients2 and Filipino and Japanese patients have lower survival than Chinese patients.7 Similarly, HCC-related mortality is highest in Puerto Rican and lowest in Cuban individuals. In contrast, Mexican persons had comparable morality rates to White persons.9

At HCC diagnosis, there are notable racial differences in phenotype or clinical characteristics. Although Black patients generally have more advanced cancer, they are younger and have fewer complications of cirrhosis.2,6,8,10 These phenotypic differences suggest that biological characteristics, such as genetic susceptibility and tumor biology, may differ across and within races and could contribute more to risk and survival disparities than previously appreciated. Because neither HCC diagnosis nor treatment currently rely on genetic or molecular information, collection of biospecimens is challenging.11–13 Compared with other cancers, our understanding of the molecular nature of HCC is relatively limited since tissue specimens are not routinely acquired.14–16 Further, existing data about HCC’s molecular and genomic diversity17–21 were generated from racially homogeneous samples, limiting the possibility of examining racial differences in HCC’s molecular classification. The “cancer genome analysis” found a significant association between race and integrated molecular HCC subtype with survival implications. However, although Black and Hispanic populations are disproportionately burdened by HCC, the cancer genome analysis sample was only 4.5% Black and 4.8% Hispanic.22 Other studies describing etiologic-independent racial differences in HCC’s genetic landscape were limited by inconsistent data collection and completion.23–25

An expanding body of literature outlines barriers to participation in biospecimen and/or biorepository research in minority populations.12,26 Understanding why minorities are underrepresented in biospecimen research26 is critical to improving representation. However, no studies have generated this foundational knowledge in diverse patients with HCC. This study aimed to identify perceptions of factors that influence the willingness of patients with HCC to participate in biospecimen research, differentiate which specimens patients are more willing to donate, and document patient’s recommendations for researchers to increase participation in biospecimen research.

METHODS

We conducted semi-structured interviews with 32 patients with HCC. Our goal was to capture the participants’ perceptions of their lived experiences using a phenomenological lens.27 Participants were recruited from a prospective study that has been enrolling patients with chronic liver disease, cirrhosis, and HCC in clinics and hospitals throughout the University of Miami/Jackson Health Systems since 2018. Participants in the prospective cohort periodically complete surveys regarding their quality of life and social determinants of health and can opt-in to provide biospecimens. Contributing biospecimens is not required. Only 3% of currently enrolled participants have declined to donate biospecimens. Biospecimens are collected in the context of clinical care. Participants who have their blood routinely drawn at an external laboratory may not have had the opportunity to provide biospecimens. To date, biospecimens have been collected from 356 (34.9%) participants.

To ensure that the interview sample reflected our center’s demographics and was racially and ethnically diverse, we purposefully targeted Hispanic, Black, and White patients from the larger study with the goal of recruiting 10 participants from each group. We included adults fluent in English or Spanish who provided verbal informed consent. We excluded vulnerable populations, including incarcerated individuals, and those unable or unwilling to provide informed consent. Study design and reporting followed the “Consolidated Criteria for Reporting Qualitative Research” checklist.28 Study team demographics were diverse; we intentionally included members who reflect the target population (Supplemental Materials, http://links.lww.com/HC9/A306; positionality statement).

We assessed participant’s perceptions of (1) willingness to engage in biospecimen collection for research; (2) factors that motivate willingness; (3) factors that hinder willingness; (4) how race, ethnicity, and culture may influence willingness; and (5) recommendations to increase participation in biospecimen research. The purpose of asking these open-ended questions was to allow participants wide latitude in providing their perceptions of their lived experiences related to biospecimen research. The semi-structured interview protocol was developed by Patricia D. Jones and Debbiesiu L. Lee, and the final interview guide is available in the Supplemental Materials (http://links.lww.com/HC9/A306). Participants also ranked willingness to provide various biospecimens, including saliva, blood, urine, feces, and liver tissue. Interviews were conducted by one of 3 trained “behavioral and community-based research shared resource” personnel through Zoom or in person, per participant preference. Twenty-four interviews were conducted in English and 8 in Spanish. Interviews were audio or video recorded and translated to English, when applicable. Participants received $30 through reloadable debit card. This study was approved by the University of Miami Miller School of Medicine Institutional Review Board (IRB# 20200276). All research was conducted in accordance with both the declarations of Helsinki and Istanbul. Written informed consent was obtained for all participants either in-person or electronically depending on the interview setting.

Data coding, analysis, and trustworthiness

All recordings were transcribed. Transcriptions were independently coded and analyzed by 2 researchers (Debbiesiu L. Lee and Ryan C. Schooley) using line-by-line coding,29 wherein each line was coded for themes and subthemes to ensure inclusion of all data. The constant comparison method30 was used throughout coding; researchers compared each participant’s data with all previous participant’s data, allowing researchers to develop themes across participants and highlight data unique to a participant. If disagreements occurred within coding, researchers (Patricia D. Jones, Ryan C. Schooley, and Debbiesiu L. Lee) discussed to reach consensus. Directed content analysis, commonly used in health care research, allowed researchers to capture all aspects of the research questions,31 increases study trustworthiness and rigor of data analysis,32 and summarize major themes and subthemes. To ensure trustworthiness, final themes and subthemes were shared with the entire team to assess the quality and helpfulness of the interpretations and findings. An audit trail was kept such that steps to develop themes and subthemes could be traced. Saturation of overarching themes occurred after 23 interviews were coded and analyzed, and 9 additional participants were interviewed to ensure that no new themes emerged. We used Nvivo for qualitative analysis and Stata version SE 16.1 for quantitative analysis. Categorical variables were expressed using proportions and continuous variables using medians and interquartile range.

RESULTS

Participants

Eleven participants identified as non-Hispanic White (34.4%) and 16 as Hispanic (50%), including one who identified as Asian Hispanic. Five participants identified as non-Hispanic Black (15.6%). While we initially planned to recruit an equal number of participants in each group to facilitate inter-group comparisons, we encountered challenges recruiting Black participants. Moreover, as the lived experiences of English-speaking Hispanic participants may differ from Spanish-speaking Hispanic participants, we opted to include an equal number of Spanish and English-speaking participants such that we could achieve thematic saturation in each group. Twenty-three participants identified as male and 9 as female. The sociodemographic characteristics of our final sample of interviewees closely approximate the HCC sample we have followed since 2018. (Figure 1 and Table 1). Participants discussed a range of experiences, motivations, and perspectives concerning participation in biospecimen research. See Figure 2 for illustrative quotes by theme and Supplemental Materials for all quotes (http://links.lww.com/HC9/A306).

FIGURE 1.

Study flow diagram.

TABLE 1.

Characteristics of interview participants

Sociodemographic characteristics	N (%) or median (IQR)
Age at HCC diagnosis (y)	63.5 (54.5–67.5)
Age at time of interview (y)	65.9 (58.0–70.5)
Race/ethnicity
Black	5 (15.6)
White	11 (34.4)
Hispanic	16 (50.0)
Sex
Male	23 (71.9)
Female	9 (28.1)
Birth country
Argentina	1 (3.1)
Bolivia	1 (3.1)
Colombia	1 (3.1)
Cuba	6 (18.8)
Dominican Republic	2 (6.3)
Ecuador	1 (3.1)
Haiti	1 (3.1)
Nicaragua	1 (3.1)
US	17 (53.1)
Venezuela	1 (3.1)
Highest education level
Less than high school	1 (3.1)
High school graduate/GED	2 (6.3)
Some college/technical degree	13 (40.6)
Bachelor’s degree	6 (18.8)
Advanced degree	7 (21.9)
Unknown/not reported	3 (9.4)
Pre-tax household income (yearly)
<$10,000	4 (12.50%)
$10,000–$19,999	2 (6.25%)
$20,000–$29,999	1 (3.13%)
$30,000–$39,999	7 (21.88%)
$40,000–$49,999	2 (6.25%)
$50,000–$89,999	6 (18.75%)
>$90,000	3 (9.38%)
Prefer not to answer	6 (18.75%)
Unknown	1 (3.13%)
Preferred language
English	24 (75.0)
Spanish	8 (25.0)
Religion
Baptist	2 (6.3)
Catholic	10 (31.3)
Christian	7 (21.9)
Jehovah’s witness	1 (3.1)
Jewish	2 (6.3)
Lutheran	1 (3.1)
None	5 (15.6)
Patient refused	1 (3.1)
Unknown/not reported	3 (9.4)
Clinical and research measures
Liver biopsy performed for HCC diagnosis	9 (28.1)
Time from enrollment in parent study to interview (y)	1.2 (0.5–2.0)
Agreed to biospecimen collection for clinical research at the University of Miami	31 (96.9)
Agreed to share biospecimen with researchers at other institutions	30 (93.8)
Biospecimen collected for research purposes
Overall	22 (68.8)
Blood	18 (56.3)
Urine	14 (43.8)
Saliva	8 (25.0)

Abbreviations: GED, General Education Diploma; IQR, interquartile range.

FIGURE 2.

Illustrative quotations by theme and subtheme.

Theme 1: general perceptions of providing biospecimens

Most participants reported being supportive of biospecimen research and willing to participate. Participants supportive of research noted, “I have no concerns providing biosamples whatsoever. I am perfectly happy to do that. Why would I object to that? Who would object to that? I do not see any reason not to do that.” Conversely, few participants noted suspicion about participating in biospecimen research or unwillingness due to a lack of trust. One stated, “Neither I trust a lot of medical institutions nor do I trust a lot of people. My concern is about having any foreign anything put into my body. Whether it is a new drug, I am not particularly thrilled about experimenting, being a guinea pig again.”

Despite an overall willingness to participate, Black participants were split when asked if they have donated biospecimens to research, with one saying they have participated and one saying they were never asked to donate. Most White participants also did not remember being asked to participate in biospecimen research. One explicitly said he would not participate in biospecimen research. Five Hispanic participants said they have participated in biospecimen research or would be willing to. Three mentioned they were unsure if they were asked, while 2 explicitly said they were not asked. No Hispanic interviewees were explicitly against participation. For reference, all interview participants were enrolled in the longitudinal cohort, where all prospective participants were asked to provide biospecimens at the time of informed consent. As noted, cohort participants can opt to provide data and biospecimens, or they can provide data only. All biospecimens are collected at the time of routine clinical care. The interviews were conducted a median of 1.2 years after enrollment in the longitudinal cohort. Therefore, some participants could not recall whether they had previously agreed to or refused biospecimen collection at the time of consent for the cohort.

Theme 2: motivations for participating in biospecimen research

For most participants, motivations for participating in research concerned wanting to help others and, to a far lesser degree, a desire for better treatment. Specifically, participants mentioned helping with early detection and treatment of liver cancer, a desire to advance the medical field and medical teaching, and consequently, helping to prolong life. One Hispanic participant said, “I am willing to help in any way that I can, and I am glad you guys do the work that you do. I think you are saving a lot of lives. I am very grateful for the work you have done for me. It is extended my life. Whatever you guys need, I am willing to help.”

One Hispanic participant noted that their desire to help was informed by prior experiences, saying, “When my mother had her liver cancer, I learned from the doctor that Hispanic women were very prone to it. My mother never had a drink; she ate like a Cuban, but she never had a drink. She wound up with cirrhosis of the liver and it turned into the tumor. We were all scratching our heads wondering where did this come from? How?”

In contrast, 1 Black and 1 White participant noted that personal gain and a desire for better treatment motivated their participation. The White participant stated, “I thought if they were studying how successful or unsuccessful their treatment programs are, I would rather be one of the subjects. I would think they (would) be a little more careful with their processes and their treatment with somebody in the study program.”

Theme 3: hindrances to providing biospecimens

Participants reported several potential hindrances to research participation, including the burden of additional appointments, discomfort or pain when giving samples, concerns with privacy and data use, the impact on recovery, and financial concerns. Although both White and Hispanic participants discussed the burden of additional appointments and all groups mentioned discomfort when giving samples, White participants were more likely to explicitly identify these as hindrances. One noted, “If I did not have ready access to a collection process, if I was not already going to the transplant institute and had to schedule something through (an outside agency), that is difficult.” Concerning pain, another said, “pain would make it difficult to give a sample; if there is pain involved or if it is something where I had to be put to sleep, that would be difficult.” White participants were the only participants to mention potential negative impacts on recovery as a hindrance.

Across all groups, participants noted concerns with privacy and data use as potential hindrances. One White participant said, “If someone were just to come here and ask for my DNA, I do not think I would give it to them. I do not want to do a DNA test. I do not want to go on ancestors.com (sic); I am not one of these people that just want to throw my DNA out there.” Another said, “I do not have any fears about samples, because it could help me; if you find something, it could be in my best interest that I am knowledgeable of it. But, as far as data is concerned, I do not want everybody knowing my business. That could be harmful to a certain extent.” Four Hispanic participants noted cost and insurance concerns as potential hindrances. However, 5 stated that they were not concerned that participation would create issues with their insurance.

Theme 4: ways to make participation easier

White participants suggested providing a general consent form and using email reminders, with one stating, “Maybe if they could get with their primary doctor and a general consent that says I will participate in any program you want to offer or that you have on file”. Both Hispanic and White participants suggested collecting samples during ongoing care, providing transportation, and using the explanted liver for research. One White participant said, “I am going to have to do labs every 2 weeks for a long, long time. If all I have to do is take one more vial, I am totally ok with that.” Hispanic participants suggested fully explaining the research and benefits of the research to encourage participation. One Hispanic participant noted, “explain to people, this would help you and others, most people want to help others, and it does not hurt. It would seem to me that if there is an explanation that we would like to do this because it is going to help many other people who have this type of thing, I can not imagine people saying no.” Relatedly, 1 Black participant noted that explanations should feel trustworthy to incentivize participation, stating, “I feel like it should be legit. And if you are explaining everything to me, it should be trustworthy.”

Theme 5: preferences of biospecimen

Participants were asked, which biospecimens would be easiest to provide and then prompted to rank order their preferences. Regardless of participant race/ethnicity, most placed saliva, blood, and urine as their most preferred sample (in that order), with more hesitation concerning stool. The least preferred sample was usually liver tissue. Before being prompted to rank samples, many participants indicated no preference. After ranking, participants noted wanting to give the least invasive sample and had hesitations about providing liver tissue samples for this reason. These findings were consistent across all races. One White participant said, “But I do not see how it (the biospecimen type) would make any difference. If it is going to be taken to the point of analyzing someone’s DNA, I do not see why it would matter how or what part of your body it came from. From my understanding, it is going to be the same.”

One White participant said, “I do not think blood, saliva, urine is difficult for a patient to give. I think for a patient to give a tissue sample requires a procedure. I do not think people are going to sign up for that just to do research.” Concerning blood, one Hispanic participant said, “I imagine drawing blood is pretty easy, relatively noninvasive way to collect samples…not invasive, not adding more suffering or pain to what you are undergoing. If you just add one more tube when you are drawing blood, I believe that most people would agree with that.” Despite the desire to give the least invasive samples, several participants also noted wanting to give samples that provided good information. One Black participant noted, “I would do the urine because I feel in the urine they can know about a lot. They also can know everything through the blood.” Finally, regarding the invasive nature of giving liver tissue samples, 1 Hispanic participant said, “A liver biopsy… I do not think there is too many people (who) want to walk into a hospital and say ‘listen, I want to have a liver biopsy.’”

Theme 6: the influence of race, culture, and religion on willingness to donate

Participants had diverse thoughts about whether they believed sociocultural factors, like race or religion, influenced people’s willingness to donate biospecimens. Participants from all racial/ethnic groups, except Black, explicitly made comments implying that race does not influence their willingness to donate biospecimens. Several participants explained this was the case for them. One Hispanic participant explained, “I hope my race and ethnicity has nothing to do with the data. We all bleed red” and “Everyone should be the same, Black, White, Chinese, blonde. I think everyone has the same heart.” One Black participant explained concerns about how others in their community should appraise the risk of participating in research stating, “My belief is that I am not going to do anything that has me at risk. I am going to let the next person do it. People in my community should do the same. I had someone in my community who did research, and it was the cause of death, but he signed the paperwork. He wanted the $3000 and he was doing some type of research. It contributed to his death because of his condition. He was aware of it, he knew he had a heart condition, and they let him know what the risks are. I am not going to be the guinea pig. I love life, and if I am not sure about something, I am not going to do it. I want to know that it works and someone else has tried it. I want to see some concrete evidence that it will work.”

Non-Black participants also considered how historical abuses experienced by certain groups might influence their likelihood to participate in research. One White participant commented on why Black individuals may be less likely to donate biospecimens due to distrust. This participant noted, “I have never confronted an issue where my race or ethnicity was being used as a guinea pig. If I were some other race, and there are examples like the Tuskegee and things like that. If I were African-American and someone asked me for anything research study, I would say ‘let us talk about this. I want more data on what the study is actually about and what you are trying to figure out before I submit myself to this.’ So, I can see where race and ethnicity might play a role, but for me it has not.” Another White participant specifically commented on differences between White individuals and persons of color that could influence participation. This participant said, “There is a lot more love, and I just do not see that as much with White people as I do with Latinos and even with the Black people. They are more family oriented. It is like somewhere along the line they (White people) got lost. I hate to even say this because it sounds really bad in today’s time, but I really do think that they (White people) tend to be more selfish.”

In addition, participants commented on how belief in conspiracy theories may diminish someone’s willingness to participate. One Hispanic participant noted that. “Some people are conspiracy theorists and they think they are going to send this stuff (biospecimens) to Moscow and they are going to know who your great-great grandfather was you know.” Another participant provided an actionable solution to this issue noting that researchers, “could spend a little more time explaining to the patients that this can only help our people.”

Participants commented on additional cultural and identity-based factors that may influence participation. We did not intentionally investigate how religion might impact one’s perceptions about biospecimen research; however, multiple participants offered that religion influences their beliefs and motivates them to participate. In contrast, one participant discussed how religion could potentially hinder one’s willingness to donate biospecimens, “because there are some religions that do not favor these things.” Several participants noted that education could influence participation. One White participant commented on both race and education, “I hate to say it, but I think it is more about education than race. I think most educated people no matter what race are going to believe that science is not going to advance without research. I think that people with lesser education may not understand that, but I do not think I believe it is race based.” Another White participant commented that age could be a factor noting, “I think that younger folks are a little more paranoid than us old people. We know we got this far because of research. The answer to the race question is no, but I think there may be some biases based on age.”

DISCUSSION

Neither genetic nor molecular information influences HCC diagnosis or treatment. Thus, patients with HCC do not routinely provide liver samples for clinical or research purposes, and the concept of biospecimen research is relatively unfamiliar. A precision medicine approach where genotypic data from diverse patients are integrated with phenotypic characteristics could greatly enhance our ability to risk stratify populations and may also lead to more precise estimates of prognosis. Achieving this vision will require the collection of biospecimens. While challenging, it is critically important to include diverse populations in biospecimen research. Continuing to exclude these groups may perpetuate existing disparities.33–35

We identified factors that may motivate or hinder willingness of patients with HCC to participate in biospecimen research. As a whole, participants were unlikely to donate liver tissue—unless resulting from discarded tissue after operation—citing pain, discomfort, and concerns about recovery as primary reasons. However, participants were very willing to provide other biospecimen types; therefore, investigators should consider these preferences when planning studies that require biospecimens. Participants indicated that convenience in time and location, synchronized scheduling, automatic reminders, and opt-in consent approaches could increase the likelihood of participation. Thus, optimizing these approaches at the system level is one suggested method to enhance participation. Most participants were motivated to participate in biospecimen research to help others and society. Disseminating specific information about how the biospecimen research could help society could likely increase motivation to participate. A few participants were concerned about biospecimen usage and required assurances that the samples were untraceable and would not be used nefariously. In Table 2, we summarize participant recommendations to enhance biospecimen research.

TABLE 2.

Actionable recommendations to enhance equity in biospecimen research

Consider general/institutional consent

Use broad opt-in or opt-out approaches

Consult and/or collaborate with primary care providers

Clearly explain potential societal benefits

Clearly explain methods used to secure confidentiality

Use email communication and reminders

Identify and address transportation barriers

Coordinate collection of biospecimens with routine clinical care

Use biospecimens that were previously collected

Ensuring confidentiality could increase the availability of biospecimens. Although not mentioned by our participants, participants in another study expressed concern that investigators would use study results for profit.35 Some participants were explicit about how race, culture, education, religion, and other aspects of demography affect people’s perceptions. Others stated that they did not believe so or consciously think about it. In a large sample of Black patients, n = 510, only 31% indicated that they would be willing to participate in a government-sponsored precision medicine research study.35 Another study found that Hispanic and Black participants were skeptical that they would benefit from the scientific advances achieved through precision medicine research due to existing structural barriers to equitable health care.36 In our study, both Black and non-Black participants endorsed that Black patients may have increased skepticism regarding participation in research. These perceptions were informed by historical examples where certain communities were exploited by research and/or personal experiences with suboptimal research outcomes. We thoughtfully considered excluding the interviewee’s perceptions that pertained to persons of other races/ethnicities to avoid potential for stereotyping. However, the theme that emerged regarding hesitancy of Black persons to participate in research is pervasive in the literature.37 Furthermore, it is important to recognize that these beliefs are not held by patients alone. Many researchers have similar perceptions and believe that little can be done to overcome barriers to inclusion of minority populations.38

Even though our sample was racially and ethnically representative of our larger HCC population, we intended to oversample Black participants to better understand how their perspectives might differ from White and Hispanic participants. Our study is therefore limited as the number of Black participants was inadequate to reach saturation in this group and draw conclusions about perceptions unique to Black individuals. Moreover, Asian participants were not included in this study, which could be considered another limitation. Our intent was to capture a sample that reflects the unique demographics of our institution with a specific focus on groups that have been underrepresented in HCC biospecimen research. Understanding the perceptions of biospecimen donation for research among patients with HCC and responding proactively to their concerns are necessary to increase participation. Based on our results, providing patients with culturally tailored educational materials about biospecimen collection could facilitate advancements in HCC research.

Most participants were Christian and well educated. Thus, our results may overrepresent the perspective of these groups. More study is needed to understand how religion might influence patient perspectives. A sample with a higher proportion of less educated individuals may also yield different results. Another inherent bias of this sample is that all were willing to share their thoughts about donating biospecimens with researchers. It may be that those who chose not to participate in this present study or the parent cohort study would also be less inclined to donate biospecimens. Furthermore, study participants mentioned that lack of transportation could be a hindrance. We have noted that transportation barriers interfere with clinical care and research engagement in our center. Using remote methods for research procedures, such as videoconferencing for informed consent and administration of interviews and/or questionnaires, may help circumvent this barrier. Use of mobile approaches for biospecimen collection may increase convenience and subsequent participation. This study provided key insight regarding barriers to the collection of biospecimen and use of genetic information, which will inform our future efforts at stakeholder engagement aimed at increasing the representation of minority patients in subsequent HCC-focused precision medicine studies.