Partnering With Faith Communities to Increase Knowledge of Precision Medicine and Genetic Research in the Black Community

Abstract

Introduction

Genomic and genetic research are integral to precision medicine and contemporary cancer care. These approaches hold great promise for addressing longstanding racial cancer disparities and poor cancer outcomes observed in Black populations. However, in Black populations, there are several barriers to participating in genomic and genetic research. Faith-based organizations, specifically Black churches, offer a unique opportunity to both address these barriers and foster the environment for community engagement that can lead to greater awareness and interest in genomics, genetics, precision medicine, and cancer clinical trials.

Methods

In the present study, the study team partnered with metropolitan Detroit Black churches to develop and implement a pilot intervention to increase genetic and clinical trial literacy, as well as interest in cancer clinical trials, titled, “The Future of Medicine is Now”. During the intervention, facilitators presented videos, produced by the project team and partners, that addressed precision medicine, familial risk, genetic risk assessment, and cancer clinical trials. Facilitators also responded to questions and led discussion throughout the program.

Results

In total, 106 individuals consented to participate in research components of the program. The mean age of the participants was 46.5 (SD = 16.8) years; 73.6% (n = 48) identified as female, and 89.6% (n = 95) identified as Black. Attitudes related to clinical trials participation improved from pre- to post-education session; at pre-test 49.5% of participants agreed with the statement “I am likely to search for a clinical trial that I might be eligible for”, as opposed to 67.0% at post-test. Improvements related to genetic literacy were also seen from pre- to post-test.

Conclusion

Results from this study suggest that collaborations with faith-based organizations are effective in building knowledge and interest in genomics, genetics, precision medicine, and research in Black communities. Future research should aim to incorporate community- and culturally-specific engagement strategies to increase participation in research.

Introduction

Genomic research is a rapidly growing field of study that explores variations in the genome that affect health, disease, and drug responses. Genomic research examines the interrelationship between genes, environment, and lifestyle, and is central to precision medicine, which address the heredity and the functioning of single genes.^1-3 Precision medicine is an emerging approach for disease treatment and prevention, as it considers the individual variability in genes, environment, and lifestyle for each person. ⁴ Precision oncology is increasingly informing targeted therapy for cancer treatment, whereby cancer drugs are selected based on an individual’s specific tumor characteristics to impede the growth, progression and/or spread of cancer. Such treatments have been approved by the Food and Drug Administration (FDA) for breast, cervical, and lung cancers, as well as several other diseases. ⁵ According to the American Cancer Society, in 2025, Black individuals are disproportionately burdened with cancer and have the lowest survival rate of any racial ethnic group for many cancers. ⁶ Precision oncology could be of benefit to Black populations; however, little is known about the benefit of precision oncology among Black individuals due to low representation in research, including genomic and genetic research studies.

Low representation of Black populations in genomic research mirrors the low representation of Black adults in cancer clinical trials; as it has been reported that only 9% of participants in the National Cancer Institute (NCI)-sponsored clinical trials were Black from 2008 to 2018. ⁷ Similarly, an examination of oral chemotherapy clinical trials reported less than a 5% inclusion of Black participants between 2009 and 2019. ⁸ In genomic research in particular, a recent review of The Cancer Genome Atlas (TCGA), which has genomic studies of more than 11,000 patients with 31 cancer types, reported that only 12% of the study samples were from Black American cancer patients. ⁹ In a systematic review conducted by Popejoy and Fullerton ¹⁰ of 2,511 genome-wide association studies (GWAS), ¹⁰ similar findings of low representation of people of color in these types of studies was also found. Less than 4% of all samples within the catalog collectively represented Black Americans, Latinx, and indigenous people. Even with the promise of precision medicine, NCI clinical trials with these objectives experience disparities as Black American participants are underrepresented. ¹¹

Lack of representation of Black participants in genomic and genetic research is related to several barriers. These include a general mistrust of research, misuse of genomic data, financial constraints, lack of transportation, and fear of invasive procedures potentially connected to these studies.^12-14 Additionally, overall health literacy^15,16 and genetic literacy ¹⁷ have also been reported as barriers to participation for the Black community in genomic and genetic research. Faith-based institutions, specifically Black churches, offer opportunities to increase knowledge related to genomic and genetic literacy. National surveys indicate that about one-third (33%) of Black individuals attend church at least once a week, ¹⁷ making Black churches a promising setting for health interventions. Previous research has been done with churches to recruit participants for studies related to cancer prevention and control efforts, such as basic cancer education, or more focused screening and education efforts on colorectal cancer, or breast and cervical cancer.^18-20 In these studies, investigators worked with members of the congregation throughout the research process, recruiting participants within the congregation into the health intervention and involving the church health team with delivering the intervention.^18-20 Additionally, previous studies have found working with Black churches has also been seen to positively change health perspectives, encourage health promotion activities, and lessen feelings of mistrust related to research within the Black community.^21,22

As part of the work described here, we partnered with Black church leaders to develop and pilot an intervention titled, “The Future of Medicine is Now,” to address factors related to low representation of Black individuals in genomic and genetic research. This report describes the process of working with community stakeholders affiliated with Black churches in metropolitan Detroit to co-develop and implement this pilot intervention. Specific aims were to 1) increase genetic literacy, 2) increase knowledge of cancer clinical trials, and 3) increase favorable attitudes toward cancer clinical trials.

Methods

Participants

In total, 392 individuals registered to attend one of six scheduled “The Future of Medicine is Now” sessions. In total, 174 individuals attended (44.4%), and 106 (60.9%) consented to participate in the research component of the program and completed assessments. The drop in individuals at registration to the number that actually attended the program may contribute to competing schedule demands, or individuals becoming unexpectedly unavailable prior to the program. Inclusion criteria included being 21 years of age or older, and the ability to speak and read English. Participants were recruited through faith community partners (described below in Intervention Development). These partners shared flyers and information about the community education session through email blasts to congregants, church social media, announcements from the pulpit, as well as word of mouth. Academic study staff also promoted the education sessions using email blasts to other community stakeholder groups and partner organizations, social media, and newsletters.

Intervention Development and Delivery

“The Future of Medicine is Now” (FOMIN) is a pilot intervention and was developed in partnership with primarily local Black faith community leaders, the majority of whom were members of the Genomic Research Action Council (G-RAC). The G-RAC is a subcommittee of the Faith Community Research Network coordinated by Faith-Based Genetic Research Institute, a non-profit organization dedicated to increasing participation of minoritized racial and ethnic groups in research, Wayne State University and Karmanos Cancer Institute. The G-RAC is part of Michigan Cancer HealthLink, an initiative to increase research capacity in diverse communities.^23-25 Within Michigan Cancer HealthLink are Cancer Action Councils (CACs), groups of cancer survivors, caregivers, and advocates, who use the knowledge of their own experiences to inform research. The G-RAC met monthly and included 13 members (100% Black, 92% female) representing seven churches in metropolitan Detroit. Ten additional community stakeholders representing a related study, five of who were also faith leaders, also provided input (100% Black, 80% female) on FOMIN.

All G-RAC members completed the Building Your Capacity (BYC) curriculum, a nine-module foundational training on cancer research, that prepares community members to work with academic researchers.^24,25 G-RAC members completed an adapted version of the BYC, focused on genomic and genetic research, in addition to cancer. The group also participated in concept mapping to identify genomic and genetic research priorities using a community lens. The training and research priority development informed the group’s decision about FOMIN components. In particular, the G-RAC was interested in creating an educational program that empowered health ministries in their communities to have programs for their congregations on the importance of genomic research, and what this research means for the future of treatment for cancer. The group developed a video-based intervention to be introduced and presented with live, in-person facilitators.

FOMIN pilot intervention content included brief videos addressing the following areas: (1) the definition of precision medicine and its relevance to healthcare in general and cancer care specifically, (2) familial risk, genetic risk in families and genetic counseling and testing, (3) the G-RAC’s research priorities developed during concept mapping, and (4) information about cancer clinical trials. The G-RAC provided suggestions for the speakers on each video, as well as members of the group appeared in some videos to discuss content. Each video ranged from 4-13 minutes in duration. FOMIN was offered six times, hosted by churches represented by G-RAC members.

Potential participants were asked to register online for one of the six sessions, which could be attended either in-person or virtually. At the time of registration, individuals were presented with the option of participating in the program’s research component related to the study aims. Individuals with limited internet access were encouraged to attend sessions in-person at a G-RAC affiliated church location, where they would be able to use devices (such as laptops and tablets) provided by the church to complete the optional research assessments. All individuals who registered for a program received two reminders to attend – one day before the session, and a second reminder on the day of the session.

Each FOMIN session began with opening remarks and prayer led by the clergy representing the church hosting the session. This was followed by an introduction to the program by a live facilitator, either a G-RAC member or academic study staff. Each of the four videos described above was shown, with breaks for questions and discussion after each video. FOMIN lasted one hour in duration.

Measures

Registrants who consented to participate in the research component received an online link to complete an assessment (pre-test) prior to their scheduled session. Items included questions about sociodemographics (e.g., age, race, gender, etc.). The pre-test also included four previously utilized and validated items assessing genetic literacy with emphasis on familial risk and genetic testing.^26-29 Responses to these four items were based on a Likert-type scale with options ranging from “definitely incorrect (1) to definitely correct (5).”

Finally, the pre-test included eleven items measuring clinical trials knowledge and six items assessing attitudes toward clinical trials. These items were developed by the National Cancer Institute Center to Reduce Cancer Health Disparities.^30,31 In total, there were eleven knowledge items (true/false) and six attitude items, where responses were based on a Likert-type scale with response options ranging from “strongly disagree (1) to strongly agree (5).” ³⁰ Items on genetic literacy and clinical trials knowledge and attitudes were administered again following each program as part of a post-test. Participants received a $25.00 USD electronic gift card for completing assessments. This research received approval and was granted an exemption from the Wayne State University Institutional Review Board (IRB-19-12-1637-B3 Expedited/Exempt Review) in Detroit, MI, on February 05, 2020. The Wayne State University Institutional Review Board approved this study with a research information sheet due to it being minimal risk. A waiver of documentation of consent was submitted and approved for this study, so participants did not have to sign an informed consent document.

Data Analysis

Frequencies were calculated to summarize participant characteristics, including age, gender, race, and education status. Responses to each genetic literacy item were dichotomized in order to group those who responded that the statement was definitely or probably correct vs those who responded not sure, probably incorrect, or definitely incorrect. Dichotomization was utilized for ease of interpretability to characterize the differences from pre-to-post, which for this pilot intervention was important, particularly given the use of Likert-type items rather than continuous variables. Authors were also concerned that the sample size per response level would not have enough power to show reliable, incremental results.

The goal of these analyses McNemar’s test (or McNemar’s χ² test), commonly used to examine the difference between paired proportions, ³² was conducted to compare the proportion of the sample that responded “definitely or probably correct” at pre-test vs post-test. Similarly, responses to each clinical trials attitude item were dichotomized in order to group those who responded that they “strongly agreed or agreed” with the statement vs those who were “unsure, disagreed, or strongly disagreed”. McNemar’s test allowed comparison of the proportion of the sample who responded “strongly agree or agree” at pre-test vs pos-test. Clinical trial knowledge scores were calculated as the percentage correct.

Results

Characteristics of the 106 participants are presented in Table 1. Among these individuals, the mean age was 46.5 years (SD = 16.8; 21-83). A total of 48 respondents (73.6%) were female. Of total respondents, 95 (89.6%) identified as Black and 11 (10.3%) identified as “Other”. From our participants, over half (56.6%) were college graduates, and 36.8% had an income level between $50,000-$99,999.

Table 1.

Sociodemographic Characteristics of Participants (N = 106).

Age
	Mean (SD) range 46.5 (16.8) 21-83
	n	%
Gender
Female	48	73.6
Male	27	25.5
Race
Black/African American	95	89.6
Other	11	10.4
Highest educational level
High school diploma or GED	9	8.5
Some college, no degree	37	34.9
College graduate	60	56.6

Table 2 shows the proportion of participants who responded “definitely correct or probably correct” to each genetic literacy item. Results of McNemar’s test revealed significant increases in three of the four items. Notably, a greater proportion of participants at post-test responded that it was definitely or probably correct that not all people with a genetic mutation may develop a genetic condition.

Table 2.

Changes in Genetic Literacy.

	Proportion of sample responding definitely correct or probably correct				P
	Pre-test		Post-test
	n	%	n	%
Genetic testing may find genetic variants that a person can pass on to his/her children	90	90.00	95	95.00	n.s
Healthy parents can have a child with a genetic condition	84	84.00	93	93.00	0.05
Genetic testing may find genetic mutations that increase a person’s chance of developing a genetic condition	81	81.00	95	95.00	0.001
Some people with a genetic mutation may not develop the genetic condition	80	67.00	86	86.87	0.0001

Prior to attending the FOMIN session, the mean clinical trials knowledge score was relatively high at 77.1% correct across the sample. There was little change at post-test, with mean knowledge score of 78.6%. This difference was not statistically significant.

Also examined were attitudes toward clinical trials. Results of McNemar’s test revealed significant increases in five of these six items in the proportion of participants who “strongly agreed or agreed” with each statement. Table 3 presents these results in detail.

Table 3.

Changes in Attitudes Towards Clinical Trials.

	Proportion of sample responding strongly agree or agree				P
	Pre-test		Post-test
	n	%	n	%
I am likely to seek out information regarding clinical trials	63	61.76	74	72.55	n.s
I am likely to search for a clinical trial that I might be eligible for	50	49.50	67	67.00	0.0005
It is important for persons who belong to minority groups (persons of color) to participate in clinical trials	68	68.00	97	95.10	0.0001
I would consider talking to my doctor or health care provider about clinical trials that are right for me	82	82.00	95	93.14	0.004
I am likely to join a clinical trial	39	39.00	67	65.69	0.001
I am likely to talk to family/friends about joining a clinical trial	51	51.00	88	88.27	0.0001

Finally, during the post-test there were 4 questions related to evaluation of the session. 100% of participants indicated that they would recommend FOMIN to a friend or family member, and the majority of participants (84.5%) indicated that they would like to be contacted for future research opportunities. Table 4 illustrates these results in greater detail.

Table 4.

Evaluation of clinical trials education video and FOMIN.

Usefulness of clinical trials education video
	Not at all		A fair amount		A lot/very much
	n	%	n	%	n	%
How useful did you find the clinical trials education video?	3	2.88	20	19.23	81	77.88

Discussion

The current study evaluated the effectiveness of a pilot education session to increase knowledge of genetic literacy and clinical trials, and to improve attitudes related to participation in a clinical trial. With the help of community partners in the Black faith community, the study team was able to convene education sessions that shared important educational information on the topics of precision medicine and genetic literacy to the Black community in a format responsive to community feedback. While earlier studies have partnered with Black faith communities broadly on clinical trials education,^33,34 they have not been specifically focused on the importance of cancer clinical trials and precision medicine. Additionally, previous studies have shown success working with community stakeholders on the development and implementation of an educational video on genomic and genetic information, ³⁵ however, there has not been work specifically with Black faith communities. Our study offers a novel approach to combine all of these important topics into a single educational session.

Our findings suggest that “The Future of Medicine is Now” education session yielded significant increases in attitudes toward participating in a clinical trial and increased genetic literacy, but not clinical trial knowledge. This finding related to clinical trials knowledge was unexpected, given that knowledge related to this topic was relatively high at pre-test with not much change at post. Previous literature has highlighted the importance of culturally sensitive efforts needed to facilitate further uptake and understanding of precision medicine. ³⁶ The results of this study emphasize this point, as well as the value of education and conversations within the community about the importance of precision medicine and tailoring of interventions for the community.

Community engagement was essential for the success of the present study. The community members involved in this project were involved with the creation of FOMIN from the development of content, promotion of sessions, and facilitation of sessions. Several studies suggest that community-based interventions, such as the involvement of faith-based organizations, utilization of barbershops, and other community settings, help to improve engagement in health education related to risk and disease reduction. ³⁷ Working with community partners and leaders from the Black faith-based organizations provided a space where genuine engagement between academic researchers and community members could exist. Furthermore, the combined integration of researchers and faith-based personnel (e.g., ministers, pastors) within the intervention increased engagement and knowledge seeking intention among participants. Similar to past research, authentic engagement with community members was critical in increasing overall knowledge and changing attitudes that the Black community may have as it relates to precision medicine and genetic research.^38,39

While our findings do have implications for community-based education sessions, there are some important limitations to this work. First, this study is a pilot intervention looking to understand the effect of the community-based education session developed with community partners. There was not a control or comparison group for this work, which could potentially contribute to causal inference related to the overall effect of the intervention. Additionally, over half of participants had a college degree, which is much higher than the 17.6% of Detroit residents who reported having a bachelor’s degree in the 2023 U.S. Census. ⁴⁰ This may have an effect on generalization and also may have accounted for the high pre-test clinical trial knowledge scores. If the individuals who participated in our study had more advanced knowledge, they may have already been familiar with topics related to genomic research, precision medicine and clinical trials. Further, we did not ask about participants’ prior experiences with genetic risk assessment and clinical trials, such as past participation in genetic counseling, having a genetic mutation that required testing, or past clinical trial enrollment. Again, such data may have shed light on our findings related to clinical trials knowledge.

Though there are limitations, this study does have strengths. Given that the topics discussed in FOMIN are not ones that many in the general public may be familiar with, there was a high number of individuals who registered for this pilot intervention. An additional strength is that this study is a novel approach to talking about topics such as genetic and genomic research, as well as clinical trials in a faith-based context.

Conclusion

The results of this pilot study offer a promising approach for improving knowledge about genetic literacy, clinical trials, and attitudes towards participation among members of communities underrepresented in research and clinical trials. Working with community partners, in particular faith-based institutions, to foster genuine community engagement was paramount to this work. Future research should involve revising the intervention to be applicable to other communities of underrepresented populations, or having this education present in other community settings, not affiliated with a church for those in the community who do not regularly attend. A similar model of community engagement will still need to be followed in doing this work with organizations outside of the faith community, as building relationships with community stakeholders takes time, and requires meaningful engagement from academic partners.

In conclusion, increasing Black individuals’ interest in genetic and genomic research can be shaped by working with community partners. Collaborating with institutions such as faith-based organizations, and working with community leaders and stakeholders, offers the opportunity to increase knowledge and participation in genetic research and literacy within this population. This may, in turn, begin to transform previously maintained opinions about medical research and rebuild trust within the Black community.

Appendix.

Abbreviations

FDA

Food and Drug Administration

NCI

National Cancer Institute

TCGA

The cancer genome atlas

FOMIN

The future of medicine is now

G-RAC

Genomic research action council

CACs

Cancer action councils

BYC

Building your capacity.

ORCID iDs

Brittany Dowe https://orcid.org/0009-0005-9032-212X

Ariel Washington https://orcid.org/0000-0003-3586-1225

Cathryn Bock https://orcid.org/0000-0002-8696-768X

Ann G. Schwartz https://orcid.org/0000-0002-9525-1157

Ethical Statement

Ethical Approval

This study received ethical approval from the Wayne State University Institutional Review Board (IRB-19-12-1637-B3 Expedited/Exempt Review) on February 05, 2020. The Wayne State University Institutional Review Board approved this study with a research information sheet due to it being minimal risk. A waiver of documentation of consent was submitted and approved for this study, so participants did not have to sign an informed consent document.