Biospecimen Research Participation Research Articles

Abstract 5534: “Simply ask and explain”: perspectives from Black patients with lung cancer on strategies to address racial disparities in biospecimen research participation

Abstract Background: Participation of racially diverse populations in research is necessary to advance cancer care. However, representation of Black individuals in biospecimen cancer research remains low and requires being asked to engage in research. We sought to understand the experiences, beliefs, and knowledge about biospecimen research among Black patients with lung cancer. Methods: Semi-structured interviews with a purposive sample of 15 Black patients diagnosed with lung cancer were conducted between January and August 2022 at a large academic center in North Carolina. Interviews were digitally recorded and transcribed and analyzed using thematic analysis. Results: Themes related to who should initiate discussions about biospecimen donation, what should be considered before donation, and communication strategies to increase participation of Black patients with cancer in biospecimen research emerged from the interviews. Most participants indicated that discussions about biospecimen donation should be initiated by trusted and knowledgeable members of the medical team and most expressed trusting their providers. Some also expressed the importance of including family members in discussions about medical and research decisions. Some participants felt it was important to consider if donating specimens would cause pain or would require additional procedures. Recommended communication strategies to facilitate participation included use of simple and easily understood language in addition to messaging related to how biospecimen donation would benefit others. Participants also felt cultural humility, respect, and empathy during research recruitment would help enhance enrollment of Black participants in biospecimen research. Of note, all participants reported never being asked to participate in biospecimen research and felt that underrepresentation of Black participants may be due to not being asked. Conclusion: Black participants in this study have not been asked to participate in biospecimen research but are willing to be engaged in conversations about research from their medical team. Simply being asked, trusting their medical provider, cultural humility, and framing the message on how the research will benefit others are some of the recommended strategies to enhance research participation among Black patients. Future research should incorporate these strategies into an intervention to assess the impact on recruiting Black individuals in biomedical research. Sponsored by the Lung Cancer Research Foundation Research Grant on Disparities in Lung Cancer Citation Format: Jeenn A. Barreiro-Rosa, Oluwatumilara Akeke, Annabella Opoku, Alison Hilton, Jessica Carda-Auten, Randall Teal, Aaron Carpenter, Hayley N. Morris, Lauren Matthews, Ashley Rankin Collins, Marjory Charlot. “Simply ask and explain”: perspectives from Black patients with lung cancer on strategies to address racial disparities in biospecimen research participation. [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 5534.

Recruiting African American Prostate Cancer Survivors for a Population-based Biobank Study.

Prostate cancer affects African American men disproportionately compared with men of other racial/ethnic groups. To identify biological bases for this health disparity, we sought to create a state-wide biobank of African American prostate cancer survivors in Florida. African American men diagnosed with prostate cancer between 2013 and 2017 and living in Florida at diagnosis were identified through the State of Florida's cancer registry. Individuals were approached via mail and telephone, assessed for eligibility, and asked for informed consent. χ2 and t tests were conducted to identify differences between eligible and reachable individuals (i.e., had valid contact information) versus consented participants. Of the 5,960 eligible and reachable individuals, 3,904 were eligible and contacted at least once, and 578 consented [overall consent rate = 10% (578/5,960); adjusted consent rate = 15% (578/3,904)]. Statistically significant (Ps < 0.05) but small differences in demographic and clinical variables were observed. Consented participants were less likely to be older than 64 (35% vs. 41%) and less likely to have received radiotherapy (36% vs. 41%) and hormone therapy (16% vs. 21%), but more likely to have regional prostate cancer (13% vs. 11%) and have undergone surgery (44% vs. 39%). Consented participants did not differ from reachable individuals on other demographic and clinical factors (Ps > 0.05). Recruiting African American prostate cancer survivors to biobanking research through a cancer registry is feasible. However, the consent rate was low, and existing challenges limit consent and participation. Strategies for overcoming barriers to informed consent and increasing participation in biospecimen research are needed to address cancer disparities.

ChicagO Multiethnic Prevention and Surveillance Study (COMPASS): Increased Response Rates Among African American Residents in Low Socioeconomic Status Neighborhoods.

African American (AA) populations experience persistent health disparities in the USA. Low representation in bio-specimen research precludes stratified analyses and creates challenges in studying health outcomes among AA populations. Previous studies examining determinants of bio-specimen research participation among minority participants have focused on individual-level barriers and facilitators. Neighborhood-level contextual factors may also inform bio-specimen research participation, possibly through social norms and the influence of social views and behaviors on neighbor's perspectives. We conducted an epidemiological study of residents in 5108 Chicago addresses to examine determinants of bio-specimen research participation among predominantly AA participants solicited for participation in the first 6years of ChicagO Multiethnic Prevention and Surveillance Study (COMPASS). We used a door-to-door recruitment strategy by interviewers of predominantly minority race and ethnicity. Participants were compensated with a $50 gift card. We achieved response rates of 30.4% for non-AA addresses and 58.0% for AA addresses, with as high as 80.3% response among AA addresses in low socioeconomic status (SES) neighborhoods. After multivariable adjustment, we found approximately 3 times the odds of study participation among predominantly AA addresses in low vs. average SES neighborhoods (odds ratio (OR) = 3.06; 95% confidence interval (CI) = 2.20-4.24). Conversely, for non-AA addresses, we observed no difference in the odds of study participation in low vs. average SES neighborhoods (OR = 0.89; 95% CI = 0.69-1.14) after multivariable adjustment. Our findings suggest that AA participants in low SES neighborhoods may be recruited for bio-specimen research through door-to-door approaches with compensation. Future studies may elucidate best practices to improve bio-specimen research participation among minority populations.

Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions

Introduction: Biospecimens are tools that have the potential to improve early identification and treatment for autism spectrum disorders (ASD) and bipolar disorders (BPD). Unfortunately, most biobanks lack racial/ethnic diversity. One challenge to including a diverse sample of youth is recruiting and engaging families. Objective: We sought to better understand facilitators and barriers to participation in biospecimen research among a diverse group of parents of youth with ASD and BPD. Methods: The current study involved 3 Mental Health Research Network sites. At each site, parents participated in an interview that explored attitudes and beliefs about genetic research. Interviews were audio-recorded, and audio files were transcribed and coded using content analysis. Results: A total of 58 interviews were conducted. Four challenges emerged: (1) contacting and engaging potential research participants, (2) motivating potential participants to read recruitment and consent materials, (3) motivating participation in research, in general, and (4) motivating participation in research involving biospecimen donation, specifically. Conclusions: Participants were eager to participate as long as the research process involved trust, clarity, and flexibility. Future research involving youth with mental health conditions would benefit from implementing multimodal strategies for recruitment and data collection and sharing knowledge gained by the research with study participants.

Knowledge and Beliefs About Biospecimen Research Among Chinese Older Women in Chicago's Chinatown.

Enhancing the participation of Chinese older women in biobanking efforts is important for precision medicine efforts, as underrepresented groups risk benefiting less than others from medical advancements in individualized therapies. Focusing on a sample of Chinese older women in Chicago's Chinatown, this qualitative study seeks to describe attitudes toward, and barriers and facilitators of, participation in biospecimen research. We conducted six focus groups among Chinese-speaking adult women age 45 and above. Focus groups were transcribed, coded, and analyzed for emergent themes. Forty-seven women participated in focus groups, the majority (66.0%) were age 66 and over and half (50.1%) had less than a high school education. Participants expressed predominantly positive attitudes toward biospecimen research, but also identified multifaceted barriers to participation that included cultural beliefs of the body, perceived physical and privacy risks, as well as perceptions related to aging. Use of minimally invasive biospecimen collection and education to promote awareness of biospecimen research were suggested facilitators to increasing biospecimen research participation. Culturally and linguistically isolated populations like Chinese older women are at risk of exclusion from advancements in precision medicine. Our findings provide cultural insights for tailoring interventions for Chinese older women to increase knowledge, change attitudes, and increase intention and participation in biospecimen research. We also highlight the need for individual, family, and community level interventions to promote healthy aging among Chinese older women.

Predictors of biospecimen donation in the Black Women's Health Study.

Although African-Americans experience higher cancer morbidity and mortality rates compared to their White counterparts, their participation in biospecimen research is lower than that of their white peers. This study investigated the prevalence and predictors of biospecimen donation in a large, cohort study of Black women. The BWHS is a follow-up study of U.S. Black women aged 21-69years enrolled through postal health questionnaires. Between January 2004 and December 2007, participants were sent a consent form with a postage-paid return envelope, and a mouthwash collection kit. Univariate and age- and educational status-adjusted logistic regression models were used to estimate the association of socio-demographic, lifestyle and medical factors with donation of biospecimens. Buccal cells with consent forms were obtained from 26,790 women, for a response rate of 51%. The strongest predictors of biospecimen donation were age: response increased from 48.6% among those aged <40 to 63.1% among those aged 60 and older [RR 1.30 (95% CI 1.27, 1.34)]; multivitamin use [RR (95% CI) 1.32 (1.30, 1.34)]; physician visit in the previous 2years [RR (95% CI) 1.61 (1.58, 1.65)], and a history of breast [RR (95% CI) 1.59 (1.56, 1.63)], colon [RR (95% CI) 1.18 (1.16, 1.20)], and cervical [RR (95% CI) 1.63 (1.60, 1.67)] cancer screening. We found that 51% of women in the geographically-dispersed Black Women's Health Study cohort were willing to provide mouthwash samples to be used for genetic analyses. The response in this study is encouraging given published findings of low overall participation rates of African-Americans in genetic studies.

Abstract IA24: Building capacity and testing the impact of methods and variables for enhancing biospecimen donations with diverse communities

Abstract IA24: Building capacity and testing the impact of methods and variables for enhancing biospecimen donations with diverse communities

To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region.

BackgroundCancer health disparities research depends on access to biospecimens from diverse racial/ethnic populations. This multimethodological study, using mixed methods for quantitative and qualitative analysis of survey results, assessed barriers, concerns, and practices for sharing biospecimens/data among researchers working with biospecimens from minority populations in a 5 state region of the United States (Arizona, Colorado, New Mexico, Oklahoma, and Texas). The ultimate goals of this research were to understand data sharing barriers among biomedical researchers; guide strategies to increase participation in biospecimen research; and strengthen collaborative opportunities among researchers.Methods and PopulationEmail invitations to anonymous participants (n = 605 individuals identified by the NIH RePORT database), resulted in 112 responses. The survey assessed demographics, specimen collection data, and attitudes about virtual biorepositories. Respondents were primarily principal investigators at PhD granting institutions (91.1%) conducting basic (62.3%) research; most were non-Hispanic White (63.4%) and men (60.6%). The low response rate limited the statistical power of the analyses, further the number of respondents for each survey question was variable.ResultsFindings from this study identified barriers to biospecimen research, including lack of access to sufficient biospecimens, and limited availability of diverse tissue samples. Many of these barriers can be attributed to poor annotation of biospecimens, and researchers’ unwillingness to share existing collections. Addressing these barriers to accessing biospecimens is essential to combating cancer in general and cancer health disparities in particular. This study confirmed researchers’ willingness to participate in a virtual biorepository (n = 50 respondents agreed). However, researchers in this region listed clear specifications for establishing and using such a biorepository: specifications related to standardized procedures, funding, and protections of human subjects and intellectual property. The results help guide strategies to increase data sharing behaviors and to increase participation of researchers with multiethnic biospecimen collections in collaborative research endeavorsConclusionsData sharing by researchers is essential to leveraging knowledge and resources needed for the advancement of research on cancer health disparities. Although U.S. funding entities have guidelines for data and resource sharing, future efforts should address researcher preferences in order to promote collaboration to address cancer health disparities.

Population-Based Analysis of Hematologic Malignancy Referrals to a Comprehensive Cancer Center, Referrals for Blood and Marrow Transplantation, and Participation in Clinical Trial, Survey, and Biospecimen Research by Race

Racial and ethnic disparities have been reported in clinical trial/research participation, utilization of autologous and allogeneic blood and marrow transplantation (BMT), and availability of allogeneic donors. We performed a population-based cohort study to investigate adult hematologic malignancy referrals to a US tertiary cancer center, utilization of BMT, and participation in clinical trial, survey, and biospecimen research by race. US Census Data and the New York State Public Access Cancer Epidemiology Database identified the racial distribution of the general population and new hematologic malignancy cases in the primary catchment area. From 2005 to 2011, 1106 patients aged 18 to 75 years were referred for BMT consultation; although the rate of BMT among hematologic malignancy referrals did not differ by race, the reasons for not receiving a BMT did. Participation in biospecimen research did not vary by race; however, African Americans and other minorities were significantly less likely to participate in survey research than European Americans. Although rates of hematologic malignancy referrals and use of BMT for minorities appear to be low (<10%), they closely reflect the race distribution of all hematologic malignancy cases and the western New York population. African Americans are equally likely as other races to participate in biospecimen banking, but further study is needed to understand reasons for lower participation in survey research.

Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.

Although research involving biospecimens is essential in advancing cancer research, minorities, especially African-Americans, are underrepresented in such research. We conducted a mixed-method (qualitative focus groups among African-Americans and quantitative cross-sectional surveys) study on factors associated with biospecimen knowledge and donation intent in the medically underserved urban communities in Southeast and Southwest Washington, DC. Focus groups were conducted among 41 African-Americans and survey data was available from 302 community residents of different races/ethnicities using convenience sampling. We used logistic regression to model the association between biospecimen knowledge and donation intent with selected sociodemographic variables using survey data. Only 47% of the participants had knowledge of the different types of biospecimens. In multivariate logistic regression models, male gender, African-American race, and low education levels were significantly associated with lower knowledge about biospecimens. Compared to Whites (79%), fewer African-Americans (39%) and Hispanics (57%) had knowledge of biospecimens but the difference was significant for African-Americans only. Positive intent to donate biospecimens for research was observed among 36% of the survey respondents. After multivariate adjustment, only biospecimen knowledge was associated with donation intent (odds ratio = 1.91, 95% confidence interval 1.12, 3.27). Contrary to popular opinion, "mistrust of the medical community" was not the most commonly reported barrier for biospecimen donation among African-Americans. "Not knowing how biospecimens will be used" and "lack of knowledge of biospecimens" were the most common barriers. Our study highlights the importance of education on biospecimens among community residents to increase minority participation in biospecimen research.

Factors associated with willingness to participate in biospecimen research among Chinese Americans.

A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research among other Asian American groups.

Culturally Appropriate Education Intervention on Biospecimen Research Participation among Chinese Americans

Chinese Americans are at increased risk for hepatitis B virus (HBV) infection. To reduce or eliminate disparities in HBV-related infection rates, participation in scientific investigations of HBV risk and treatment, including biospecimen sampling, is important. However, Asian Americans have low rates of participation in biospecimen research, and little is known about how educational interventions affect knowledge and participation in HBV-related biospecimen research. Eight Chinese community-based organizations participated in a quasi-experimental, two-group design with education assessments at pre- and postworkshop and a 3-month follow-up. Four sites were randomly assigned to receive the intervention (n = 175) and four sites to receive general health education (control; n = 240). Participant knowledge about biospecimen research increased from pre- to posteducation in the intervention but not in the control condition. Of intervention participants, 83.4% (146/175) donated one tube of blood for future HBV biospecimen research, and 50.9% (89/175) donated another tube of blood for HBV testing. In contrast, only 1.1% of participants in the control condition reported donating a blood sample at follow-up assessment. The intervention program significantly increased knowledge of and participation in HBV biospecimen research among Chinese Americans. Community-based participatory research (CBPR) methods featured active support by community leaders, a culturally specific curriculum, and convenient, immediate access to blood sampling, which resulted in high donation rates. HBV-related morbidity and mortality is an urgent problem faced by Chinese Americans. CBPR provides a model for engaging communities in early detection, vaccination, and treatment that can reduce this health threat.

Pilot Intervention Outcomes of an Educational Program for Biospecimen Research Participation

Biospecimen banking programs are critically dependent on participation of diverse population members. The purpose of this study was to test a pilot intervention to enhance recruitment to a biospecimen bank among racially diverse community members. A mixed methods, community-based participatory research (CBPR) orientation was used to develop and pilot an intervention to educate and recruit participants to a biospecimen bank. Pre- and post-assessments of knowledge about research, perceived costs and benefits of participation (expected utility), and emotional states associated with research participation (affective associations) as well as post-intervention participation in biobanking were examined to determine intervention effectiveness. The pilot intervention educated 148 community members; 107 (73%) donated blood and 77 (52%) completed a 36-page lifestyle questionnaire. Thirty-two percent of participants were African American and 11% were Native American. Participating in the educational program significantly reduced negative affect associated with research involving collection of genetic material or completion of a survey. Improved knowledge and understanding of biobanking and research through a CBPR approach are likely to increase participation rates in biobanking for diverse community members. Accurate information and improved knowledge can reduce individual anxiety and concerns that serve as barriers to research participation.

Community-Based Partnership to Identify Keys to Biospecimen Research Participation

Reported barriers to participation in biospecimen banking include unwillingness to undergo blood-draw procedures and concerns about confidentiality breaches, privacy, and discrimination. The study identified key factors and influential perspectives to address these barriers and inform methods to improve recruitment and research participation among racially diverse community. A mixed-methods, community-based participatory research orientation was used to collect formative findings to develop a pilot intervention. Methods included nine key informant interviews, three focus groups (n = 26), and 64 community surveys. Findings showed: (1) increased concern of exploitation by pharmaceutical company sponsor; (2) varied perceptions about monetary compensation for research participation; and (3) willingness to participate in a biospecimen banking study by more than 30% of the people in the community survey. Research participation and biospecimen donation may be influenced by who is sponsoring a study. Monetary incentives for study participation may be more important for African American than White participants.

Abstract A19: Development and pilot testing of a culturally appropriate intervention on biospecimen research among Chinese Americans

Abstract Background: There is a paucity of information on recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, there are neither published studies focused on examining the impact of psychosocial and cultural factors on HBV biospecimen research among this population, nor educational interventions undertaken to increase the knowledge of and changes in attitudes toward greater participation in biobanking research among this large subset of the Asian populations. Objective: The purpose of this study was to develop and test the feasibility and effectiveness of a culturally and linguistically appropriate education on HBV-related biospecimen research participation among Chinese American population in Philadelphia. Methods: Guided by the theoretical framework of the Health Belief Model (HBM) and Community-Based participatory Research (CBPR) principles, mixed research methods of qualitative and quantitative studies were used. Two focus groups with Chinese community lay members (n=20) and 8 in-depth interviews with Chinese community leaders who represent four Chinese CBOs were conducted to have a better understanding of Chinese American cultural beliefs, attitudes, perceived barriers and intentions to participate in hepB biospecimen research, as well as receive recommendations for developing and implementing a culturally appropriate education intervention from the perspectives of both Chinese community leaders and lay members. For the pilot study, 2-arm quasi-experimental design with pre- and post education intervention assessments was used. Eight study sites will be recruited: four will be assigned to intervention group and four to control group. Approximately a total of 320 participants will be enrolled into the study. Results: The qualitative results showed that 40% of the participants indicated that blood donation may be harmful to one's health. Participants expressed that if the research impact has direct benefit relevant to them or their community, they would be more willing to participate. About one-third of the participants expressed willingness to donate blood for future HBV biospecimen research for the reason of advancing science. All participants stated that culturally appropriate education is important and suggested that the education program should be carried out in collaboration with community leaders in order to achieve its success. The pilot testing of the education program is planned to complete in November 2011. A multidisciplinary team was established. The preliminary data showed potential success in increasing knowledge of, changing attitudes toward and intention to participation in future HBV biospecimen research among Chinese Americans. Implications: Findings from the focus groups and in-depth interviews with community leaders and members provided us with profound insights for developing culturally appropriate intervention to increase biospecimen research participation among Chinese Americans. This pilot study is expected to yield new data on the intervention effects, which leads to a solid foundation for future large-scale controlled intervention trials in the Chinese American and other Asian populations. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A19.