Proceedings of a Workshop—in Brief

Sustaining Community Engagement in Genomics Research

Proceedings of a Workshop—in Brief

Several factors have negatively impacted the trustworthiness¹ of genomics research among underrepresented populations, such as eugenics and other historical unethical practices, and existing systemic racism and structural discrimination (Lemke et al., 2022). This lack of trustworthiness can hinder underrepresented populations from participating in research, making community engagement particularly important in the field of genomics. Researchers participate in community engagement by working collaboratively with populations related to their studies. Such work can improve the quality of both the science itself and the research benefits returned to the community. The American Society of Human Genetics recently developed guidance for researchers to help implement engagement throughout the research lifecycle (Lemke et al., 2022). This guidance highlights the need for researchers to sustain long-term relationships with community members, helping improve the trustworthiness of the research teams with communities. Engagement should not be a “one-and-done” activity, raising the question of how to sustain connections and involve communities as partners, particularly after grant funding expires (Lemke et al., 2022).

A public workshop was held by the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Genomics and Precision Health to explore the challenges and opportunities for sustaining community engagement and partnerships in genomics research. A key premise of the workshop was the importance of understanding the past harms that have eroded community trust and the structural and logistical factors, such as funding requirements and grantee responsibilities, that interfere with forming strong partnerships, explained Sandra Soo-Jin Lee, professor of medical humanities and ethics and chief of the division of ethics at Columbia University. Understanding how to uphold an ethical and moral responsibility to engage with communities and build sustained relationships throughout the research process is essential to genomics research, she said, and the workshop focused both on how to improve research through meaningful engagement with communities and on the perceived benefit for communities (Box 1).

__________________

KEYNOTE ADDRESS

Sustained community engagement implies building an ongoing outreach effort that strengthens and supports the community, including during times of suffering, said Joon-Ho Yu, a research assistant professor of pediatrics at the University of Washington and the deputy director of the Korean Community Service Center (KCSC). Sustaining community engagement includes researchers informing, consulting to learn community priorities, involving, collaborating with, and sharing leadership with the community. As an example of community-engaged research, Yu discussed the Community Health Interests for Researchers and Oversight Networks (CHIRON), a research project started at Sage Bionetworks that operates on two basic assumptions: that reusing data is a moral good and that research is better when communities are involved (Doerr and Yu, 2023). Since aggregating data for reuse further separates the data from the communities they came from, CHIRON developed a toolkit to help researchers, ethics boards, and data access organizations bring community context back into biorepository-driven research, Yu said. Academic and community work groups provided input on conceptualizing and designing the toolkit, iterated on the toolkit, and planned CHIRON’s pilot phase. Researchers learned how communities could be engaged throughout the lifecycle of research involving big health data from community engagement studios. Such practices and policies of engaging communities when using secondary data could be institutionalized more broadly, Yu suggested.

Community-led research is complicated, involving many value-based decisions, Yu said during his description of KCSC, a learning community-based organization that uses its resources to provide opportunities to develop capacity and engage in assessment and evaluation for community-centered and prevention intervention research. For example, KCSC ended a burdensome academic research partnership where the academics struggled to differentiate their own priorities from those of the community. To achieve collective impact and change society by centering community power, systems and institutions must shift their perspectives on how communities consult on and inform research, he suggested. Researchers could act as consultants to communities, get involved with communities, offer collaborative opportunities, and, if asked by the community, help lead, he said.

UNDERSTANDING COMMUNITY NEEDS FROM THE COMMUNITY

A Perspective from Disability Communities

Engaging with disability communities requires acknowledging the historical trauma, rooted in eugenics, that disability communities have experienced related to genetic counseling (Roadhouse et al., 2018), said Andrea Schelhaas, a genetic counselor at Nemours Children’s Hospital. Genetic counselors and geneticists, many of whom do not have a disability, adopt contradictory roles, advocating for those with genetic conditions while offering prenatal screening to eliminate those conditions, she added. Screening can be challenging as it may obstruct social acceptance and support for those who are disabled or living with disabilities and can send the message that a single trait defines the whole person, she said. This leads to misunderstandings of what life looks like for a child with disabilities or their family. The term “disability paradox” refers to the fact that many people with disabilities do not think of their disability as being as harmful or unfortunate as non-disabled individuals may perceive, she explained. Having a disability is not synonymous with poor health. Discrimination or prejudice against disabled individuals is known as ableism, which involves the assumption that disabled people are inherently less capable, valuable, and able to have personal autonomy. Disability pride reflects the opposite view, holding that people with disabilities should be proud of their disabled identity because of their connection to the most diverse U.S. minority, the disability community, she added.

A Perspective from Alaska Native and American Indian Communities

Engagement includes understanding the benefit of the research to the community, as determined by the community, said Julie Beans, a researcher with Southcentral Foundation. Work at Southcentral Foundation uses community-placed researchers to focus on addressing competing community health priorities in Alaska Native and American Indian communities. These priorities may not always be genomics-based, but at Southcentral they still must be tackled. Researchers work to identify where genomics research falls into those priorities. Additional considerations for their work include the ethics of genomics research with Alaska Native and American Indian people and what equity in research looks like. It is important to recognize that researchers, including those

who are community-placed, cannot determine what the benefit of the research is, Beans said. It is up to the community to define it. Southcentral Foundation has built long-term relationships with the community to learn and hear what the health priorities are and what the benefit will be, she added.

A Perspective from the Sickle Cell Community

Underfunding and underrepresentation of sickle cell disease in the research landscape is something researchers must recognize and address to show the sickle cell community that they are trustworthy, said Cassandra Trimnell, the founder and executive director of Sickle Cell 101. Sickle Cell 101 has worked to inform the sickle cell community about the importance of engaging with research, data collection, and clinical trials. It has also worked to help individuals understand that there are safeguards to prevent past abuses from occurring again and to empower individuals to make decisions about their health and treatment plans, Trimnell said. Sickle Cell 101 also helps researchers and pharmaceutical companies determine prioritized endpoints for individuals with sickle cell disease, and it has ongoing studies on people’s diagnosis journeys and on the community’s perception of newly approved gene therapies. Data gathered by Sickle Cell 101 can help drive patient-prioritized programming and topics and identify research gaps relevant to important issues for the sickle cell community. Sickle Cell 101 provides an example of how researchers can work with patient advocacy organizations to begin engaging the patient population they wish to study, she noted.

A Perspective from Trans and Gender-Diverse² Communities

In hereditary cancer care, queer and trans individuals face discrimination, health disparities, and exclusion from the production of medical knowledge, explained Sarah Roth, a genetic counselor and Ph.D. candidate at Johns Hopkins University. Over the past 4 years, she has convened a virtual support group for queer and transgender people who live with an elevated risk of hereditary cancer based on a genetic diagnosis and are navigating cancer care. Many members need a safe space to process intertwining journeys through cancer care and gender expression, she added. In a study exploring gender-diverse experiences with hereditary cancer care, participants recommended that clinicians communicate allyship, be attentive to gendered language, partner with patients around difficult decisions, validate patient preferences, and work to grasp the emotional significance of living with cancer risk (Roth et al., 2024). A way to begin engaging communities is to work through trusted patient advocacy groups to build on pre-existing relationships where grounds are already laid for a community member’s sense of safety or security, Roth suggested. Sharing the resulting publication to enable participants to stay abreast of and feel connected to the research is another key piece to engagement that Roth highlighted.

Where Do Community Engagement and Genomics Research Intersect?

The importance of genomics in people’s lives depends on their life experiences, several speakers noted. For individuals who may not see the importance of genomics, Beans suggests breaking down relatable experiences and placing those in the context of genomics. The importance of seeing what is happening in a community in terms of its priority health initiatives and figuring out how genomics fits into those initiatives was highlighted by Yu. In that respect, it is critical to understand the community’s needs, what it wants, and what it does not want. For example, a company working on a treatment for achondroplasia, the most common form of shortlimbed dwarfism, came to a national conference and declared that it would make everyone taller, Schelhaas recounted. That message was received poorly, and a decade later, there is still mistrust and challenges engaging that community in research.

Navigating Medical Mistrust through Communicating Failures

Rebuilding trust and becoming trustworthy, several of the session’s speakers agreed, requires transparency, including communicating about failures in research. Transparency engages the community, Trimnell said. Recognizing where research or engagement is not working means seeing the burden on participants and identifying when it has become too high to continue, Yu said. Schelhaas added that it is important to know one’s audience and to speak to the community to know what the research endpoints should look like as to avoid failures in outputs. While transparency and disclosure of failures is important in engagement, Roth said, there are structural incentives, such as in funding, for masking failures.

__________________

CHALLENGES AND OPPORTUNITIES FOR SUSTAINING ENGAGEMENT

Moving Beyond Community Engagement

“Engagement washing” refers to the practice of researchers pursuing engagement only to satisfy reputational aims and maintain the status quo while engaging the community in a limited, perfunctory, or tokenized manner, explained Krystal Tsosie, an assistant professor at Arizona State University and co-founder of the Native BioData Consortium. Authentic community engagement goes beyond using engagement language in recruitment and is intended to change decision-making authority. Indigenous researchers advocate for community-driven research as opposed to community engagement because researchers have historically treated community engagement as a spectrum in which one act of including community is still called engagement, Tsosie said. However, community-driven research can be challenging, given the lack of researcher training in engagement within qualitative research, of local research infrastructure, and of consensus across multiple communities involved in a project. Additional challenges include conflicting institutional and community policies, academia’s publish-or-perish climate, and securing adequate grant funding.

Community engagement is often only considered at the initial phase of data collection. However, data can have a long lifespan and be reused for additional studies, so it is important for communities to be informed of this and engaged throughout the data lifecycle, Tsosie suggested. This is true for many areas of research, but in genomics it is of particular importance as there are greater risks related to re-identifiability of small, underrepresented groups, leading to genomic racial profiling and circumvention of group consent. Genomics data are often dehumanized in the sense that scientists may not recognize that each line in the data represents a person, she added. Updating broad consent models to dynamic consent models and using federated systems so that researchers do not always have access to all the data can help give communities authority over their own data. The Native BioData Consortium has done this by creating a consent platform that enables participants to change their consent for future iterations of data sharing, promoting transparency and trust, Tsosie said. The participant portal has also facilitated community member education and agency to decide which research their data can be used for, she added. The findability, accessibility, interoperability, and replicability (FAIR) data access standard is centered on researchers’ rights to access data and does not ensure that communities benefit from their data. Instead, researchers could follow the collective benefit, authority to control, responsibility, and ethics (CARE) principles for Indigenous Data Governance.

For Indigenous populations, the idea that participating in genomics research will benefit them does not align with their experiences where they do not have equitable access to preventive health care. For example, recruiting more Indigenous people into datasets will not solve health inequities because the populations are so small that pharmaceutical companies are not interested in developing personalized therapies for the conditions that primarily affect Indigenous populations, Tsosie said. To ensure that communities benefit equitably from research, she encouraged researchers to consider a community’s ability to claim intellectual property deriving from the research, as allowed through the Bayh–Dole Act, and to establish community trusts or fractional ownership.

Sustaining Community Engagement through Established Organizations

In 2022, 23andMe launched the Sickle Cell Carrier Status Awareness Program in collaboration with Lametra Scott, the founder and executive director of the Breaking the SSickle Cell Cycle Foundation.³ The goal of this program is to examine ways of increasing people’s knowledge about their sickle cell trait status. The program encountered organizational barriers, including a lack of cultural sensitivity; to address this, research and recruitment teams should have representation from the communities they are hoping to engage, Scott suggested. The program also faced structural barriers, including how to maintain long term participant engagement, as engagement does not end at recruitment. If continued participant engagement is not baked in from the start, then the efforts that were initiated will end. Researchers can develop strategic partnerships with organizations of interest that can continue the mission when the research project is over, she suggested.

__________________

When designing a project, it is important to engage the target population in the full research and development process to ensure that the project addresses the interests of the communities, not the researchers, and that there is mutual benefit, Scott added. Researchers should be patient when building relationships because it takes time to overcome negative historical experiences. Additionally, Scott offered several principles for building relationships. First, be present; this can mean in-person, online, or through written communication beyond regular work hours. Be transparent; express goals on the front end that do not change during the project, and give participants control of their involvement. Transparency also involves being up front when failures such as data breaches occur and being honest about how these failures will be handled and explain safeguards for the future. Be respectful of participants’ time and offer compensation for the work they are doing by including it as a line item in a grant proposal. Be true and follow through with promised actions. Finally, listen to concerns about participating, such as those related to the release of data or to being exploited for financial gain, she noted.

Sustaining Partnerships

Continual iterative engagement is the best approach to sustaining community engagement, which requires involving advisory committees from study design to publishing and authorship, said Kate Mittendorf, a research assistant professor of medicine at Vanderbilt University Medical Center. It is important for researchers to seek community feedback on every aspect of a study, including data analysis. In one study using secondary data, Mittendorf involved the community in deciding what covariates to include, which led to covariates that were not previously considered by researchers and proved to be important and measurable from electronic health record data. This kind of engagement leads to more genuine community involvement and sustained relationships, they added.

Challenges to sustaining community engagement are time, trustworthiness, transparency, and team science, Mittendorf said. Community engagement takes time and can be a challenge in publish-or-perish environments and when grant timelines expect the same level of productivity and recruitment as for research without engagement. Community engagement time needs to start being valued where just as much budget, resources, and staff are placed on those aspects of a study, they suggested. Trustworthiness of researchers can be influenced by a few factors, including the institution, news and events, political climate, and the researchers themselves. For example, in a study interviewing transgender and gender-diverse genomic study participants, the institution where the research was taking place released the medical records of people receiving gender-affirming care, which diminished the trustworthiness of the institution. When events such as this occur, researchers may not be able to fix the situation, but an awareness of the issue and discussion with the community may help maintain the relationship. If one’s institution creates a problem, researchers can be part of the solution, advocating for the affected communities within the institution and communicating with the participants about awareness of the issue and how it affects them, Mittendorf said. Easily understood consent forms, written to protect the participant rather than the institution, can also foster trustworthiness and transparency, they added. Team science approaches are important, with community participants being valued as team members and collaborators, not just as participants; they can be scientists. This is challenging, given academia’s hierarchical system, but it is important to think of everyone on a research team, including research staff and community members, as having equal value, Mittendorf said.

Benefits to Communities

Ensuring benefit to the community was suggested by several speakers throughout the day. Often when research findings are released, the task of translating the benefits for communities disproportionately falls onto communities themselves instead of on the researchers who have overpromised on something that they cannot deliver, Tsosie said. Benefit should only be defined by the communities themselves; this requires communities having a seat at the table to define benefit equitably and with power, she added. The input and knowledge from communities on factors that influence such things as health need to be valued, Mittendorf said. While compensation is important to valuing community time, from an institutional review board (IRB) standpoint, compensation cannot be considered a benefit, Tsosie noted.

Training Researchers and Ethics

More holistic approaches in training could be developed to encompass skillsets needed for sustaining community engagement, Tsosie said. People who are participating in research are individuals who are already somewhat comfortable with sharing their data, and there are others in their communities who will not participate because of a lack of trustworthiness, Mittendorf added. Training in trustworthiness and respecting time and sensitivities could help researchers avoid the bait and switch of “curious questions” that can lead to concerns of exploitation down the road, Mittendorf said. Curious questions are questions that researchers ask because they are of interest to them and not because they are relevant to the values and needs of the community. Researchers could be trained in data ethics, specifically highlighting the imperative for the research to benefit communities and for researchers to highlight group risks when recruiting, Tsosie said.

METHODOLOGIES

Democratic Deliberation

One method to sustain relationships with communities is democratic deliberation, suggested Michele Gornick, a consultant, founder of Health Data Matters, and adjunct assistant professor at Emory University. There are three essential components to democratic deliberation: education, engagement, and eliciting people’s views. The democratic deliberation process starts with education where researchers work with health literacy experts and community members to make relevant information digestible so that people can engage with it. Community leaders are engaged to train them to work with their community and solicit input, Gornick said. In democratic deliberation, community members discuss problems among themselves, without researchers present, and develop solutions. Having peers lead the discussions without researchers present can result in more open conversations, she added. It is important for all voices to be represented, including people who support research or agree with the proposed research plan, those that do not, and those who do not want their data shared, she explained. The process ends with eliciting people’s views; once the community members generate a list of pros and cons about what they think should happen in research, they vote. Those decisions are presented to the researchers and other interested parties, such as policy makers, she said.

Additional key steps for sustaining community engagement were outlined by Gornick. Researchers should meet communities where they are, rather than having people come to them to participate, she said. This looks different for different communities but could include going to churches, support groups, libraries, and public health clinics. Resources need to be provided to the community to allow its members to participate (e.g., technology or materials in their first, or native language), she suggested. Community members want to participate in their health and want researchers to ask about what they need. It is important for researchers to learn from community members about what their needs are. Asking people about their needs is often the first step to building trustworthiness, she said.

Partnerships – Advisory Committees, Consortiums, and Ambassadors

Community engagement must move from a strictly transactional relationship to one that is transformational and allows communities and researchers to create something new and better together, said Mitchell Lunn, an associate professor of medicine, epidemiology, and population health at the Stanford University School of Medicine. Engaging minoritized communities in this way is important because they have been marginalized, disrespected, and researched upon rather than given opportunities to partner with researchers. PRIDEnet, a national community engagement network that supports meaningful engagement of sexual and gender minority (SGM)⁴ populations, intends to do this by involving participants in the whole research process, from study design to the dissemination of results and implementation, he explained. PRIDEnet includes a self-governing participant advisory committee, ambassadors, and a community partner consortium. The patient advisory committee and the ambassadors meet monthly and receive $2,500 a year for their work. The patient advisory committee meets to have candid discussions about the communities’ needs, he said. Ambassadors serve as spokespeople for and reviewers of PRIDEnet’s projects and deliverables; they also help identify new opportunities for engagement, Lunn said. The community partner consortium is made up of SGM-serving community-based organizations that participate in listening sessions, publicize PRIDEnet

__________________

projects, recruit research participants and advisors, and provide subject-matter expertise. In return, PRIDEnet helps them fulfill their health-related missions and provides some funding, Lunn said.

The PRIDE Study, which uses PRIDEnet in its engagement, is a longitudinal cohort study of SGM people. The study began by piloting a community-based discussion board to ask the PRIDEnet community what they thought should be studied. Input from over 18,000 people helped scientists create a research agenda that has guided The PRIDE Study’s work, Lunn said. This use of an online, community-based discussion board is an example of meeting community members where they are, for PRIDEnet participants, in a more convenient and safe space, which is important to effective community engagement. Participants are given agency by having the same power as researchers in deciding whether data are shared or not. PRIDEnet researchers engage throughout the country by holding community listening sessions to understand the various experiences and barriers to participation that SGM individuals face. In this work, it is important to hire staff from the communities involved, Lunn said echoing other speakers.

When community engagement occurs during all stages of the research process, it helps to counter historical and ongoing mistreatment and oppression and to build trustworthiness. It is important to return the results of a study back to the communities that participated, Lunn said. PRIDEnet notifies participants of research results before anyone else and develops dissemination plans with plain language summaries of findings and infographics with key messages from studies. Soon The PRIDE Study portal will allow participants to see which studies their data were used in and, hopefully, feel the value of participation. To ensure that research always centers the communities, a community engagement philosophy with guiding principles should be developed, Lunn said. Community engagement requires intentional and dedicated efforts to include marginalized and underrepresented communities, he said.

Funding Sustained Community Engagement

Achieving early community engagement starts by determining the kind of community engagement needed and what can be funded, Lunn said. Getting funding before a grant for the research project is written can come from seed grants, which are smaller start-up amounts for engagement which may come from universities. Community engagement-specific funding such as from the Patient-Centered Outcomes Research Institute (PCORI) is much less common but can enable rapid community engagement growth. Lunn said that more traditional sources of funding, such as the National Institutes of Health (NIH), rarely provide funds for community engagement, but PRIDEnet has found success in integrating community engagement into one or more specific aims in a grant versus having a community engagement-focused aim stand by itself. In terms of changing policy to make community engagement the norm for genomics research, Lunn said that it may be necessary for NIH and other funding agencies to include meaningful community engagement into funding opportunity announcements.

Capacity Building through Existing Structures

One advantage of the Community Engagement for Genomics and Biobanking in Africa (CEBioGen), a project within the Human Hereditary and Health in Africa (H3Africa) Consortium, was the involvement of local researchers living in the communities where strong bonds were already in place, said Paulina Tindana, an associate professor of bioethics at the University of Ghana School of Public Health. Local researchers can report back the findings from a study to the community, which is key to ensuring that the communities do not feel that they are only a means to an end. Each project in H3Africa started with community mapping, defining the community and the goals of engagement, having a trained and dedicated community engagement staff, and discussing roles, expectations, anticipated challenges, and plans to embed feedback throughout the engagement process. Capacity-building workshops to train the next generation and build on existing infrastructure were organized through H3Africa. Building on existing structures and giving communities the agency to create community-driven advisory boards can help lead to longer-term engagement and relationships that go beyond the research lifecycle, Tindana said.

Community engagement requires two-way communication to create opportunities for co-learning and co-creating knowledge to find solutions for a specific problem, Tindana said. Key community leaders can serve

as consultants who highlight cultural issues, helping to shape how a particular project is conducted. Engagement is empowerment of the community to maintain and sustain initiatives from the research programs beyond the project endpoint, which requires building on existing structures, she said. As other speakers noted, the critical factors of successful, sustainable community engagement include mutual respect, trust, and benefit; transparency and accountability; inclusiveness; reciprocity; solidarity; timely communication; and giving back to the community. Community engagement is both an art and a science that should build on indigenous knowledge, deploying what already exists and using innovative and deliberative approaches to demystifying and communicating genomics, Tindana said. It is important to have a multidisciplinary engagement team and to embed ethics and community engagement into the scientific process. Knowledge translation through the community is also an important component for sustaining engagement beyond the endpoint of a project, Tindana noted.

Encouraging Community Engagement with Institutions and Funders

Community engagement results in improved studies, Lunn said. Researchers can encourage institutions and funders to see the benefits of engagement by highlighting how it can help achieve their mission to improve health of communities. Early engagement ensures that the research being done is important to the communities and that the endpoints are ones that the community is looking for. Finally, engagement builds partnerships with the university or institution that can provide helpful inputs, Lunn added. There have been examples where a lack of community engagement stopped research, Tindana said. Deliberative sessions with communities and decision makers can benefit the decision makers by letting them hear what can be done to help communities and the ways that help can be provided, Gornick added. Funders and researchers who develop datasets can also mandate the incorporation of community engagement by researchers receiving funding or using datasets, Lunn added.

MEASURING AND ASSESSING

Developing Meaningful Community Engagement Measures

More organizations are engaging communities, but community engagement is only meaningful when it leads to big shifts in resources, systems, relationships, policies, programs, and practices, said Ayodola Anise, a senior director at the Milken Institute. The only way to know if engagement is meaningful is to ask the people who are being engaged with. The National Academy of Medicine (NAM) is working on a project to build evidence-based indicators and metrics to measure meaningful engagement of individuals, families, and community groups in a range of settings, she said.⁵ The organizing committee for this NAM activity, on which Anise sits, influenced aspects of the project through their own community engagement, including the addition of community leaders to the committee and other changes to the project’s focus, processes, timeline, resources, and outputs, Anise added. The project team identified eight foundational standards for a measurement strategy, but in her talk she focused on one standard: defining the ideal of what should be measured in meaningful community engagement, rather than what already exists in the literature. To develop a menu of options to measure engagement, three resources were produced: a conceptual model, impact stories to demonstrate successful engagement activities, and assessment instruments and questions.

The conceptual model illustrated the dynamic relationship between meaningful community engagement and improved health, health care outcomes, and health equity through transformed systems, Anise said. This project also included a thorough review of the literature, resulting in 28 effective, evidence-based, and community-engaged measurement instruments. To help researchers identify how to measure aspects of community engagement, the project produced assessment instrument summaries, including questions connected to the conceptual model, she explained. The aim is not for researchers to measure everything in the conceptual model, but rather for them to identify the two or three areas that are most important and to look at those assessment instruments, Anise said.

Measuring Metrics that Matter

The ways researchers measure engagement must first be aligned with the values and intentions that matter to the communities they are in partnership with, said Tabia Henry Akintobi, a professor and the chair of community health and preventive medicine at Morehouse School of Medicine. These metrics are disease-agnostic but center

__________________

the values and outcomes that matter to the community, she added. The Principles of Community Engagement Primer,⁶ which was developed by NIH and the Center for Disease Control and Prevention, reviews these values and the evaluations related to them, she added. In highlighting resources for measuring engagement, Henry Akintobi said that researchers should ensure the resources they plan to use fit within the context of their partnership. An additional resource discussed was one developed through a partnership of the National Human Genome Research Institute and researchers at Morehouse School of Medicine who identified priorities important to community wisdom holders that the community will translate into a toolkit for researchers. Through this partnership several critically important themes arose to be addressed in community engagement, she said: benefits and risks; research outcomes that are child- and family-centered; concerns and answers regarding data use; information and ownership; and guidance about people trusted as research messengers or influencers.

At Morehouse School of Medicine, community leaders are at the center of its work and help ensure that researchers are measuring what matters, Henry Akintobi said. Morehouse does this through community governance where it thinks about community members’ historical and current justified hesitancy towards research. Part of this governance is a community coalition board aimed at shifting equitable power to communities in research. Community leaders on the board have the majority of seats and academics are not permitted to have leadership roles, she said. Moreover, if the board is making decisions about metrics or grant applications, there must be a certain number of community members present. Community members on this board will tell researchers “no” if there is no identified community benefit, Henry Akintobi said. One important tool that was developed in collaboration with the board focuses on community member satisfaction, Henry Akintobi noted. It arose from community wisdom holders’ desire to ensure that their time is valued and there is satisfaction with engagement efforts. This tool, used annually, assesses satisfaction, leadership, involvement, and communication. None of these metrics are research metrics, but they are partnership and collaboration metrics that matter to the community, she said. Through the community coalition board, members can speak the truth of their priorities to the powers that be within Morehouse.

The workshop participants were encouraged to consider ways to innovate measurements of community engagement. Consider and embrace the complexities of intersection and the ways that researchers and communities show up to ensure that those at the table represent all who should be there, including those in positions of leadership, Henry Akintobi said. Finally, time could be invested in measuring and sustaining trustworthiness so that partnerships become sustainable and research that matters is conducted.

Achieving Equitable Community and Participant Engagement

Two of the best indicators of success are what the community says and feels about a project and whether the project changed because the community was engaged, said Karriem Watson, the chief engagement officer for the NIH All of Us Research Program. Since effective engagement will not lead to the recruitment of every person, frameworks for engagement are needed to avoid the pitfall of using recruitment to measure the success of engagement. The reason for this is that engagement is aimed at relationship building, where discrepancies in the power dynamic may be identified. While justified historic mistrust plays a role, the largest reason some populations do not participate in research is a lack of access or because they have not been asked. The narrative of communities being hard to reach should shift to them being under-engaged, he suggested. In a project to engage African American men in Chicago, community members were engaged as citizen scientists so that the work could embody “for us, by us” because members of the community did not see themselves in the data, Watson explained. The project was led by the community, where community members were authors on publications from the work. The project engaged over 200 African American men and over 25 citizen scientists who are still engaging their communities with research projects, he said.

A measure of effective engagement is taking a different approach and creating measurable change, Watson said. For example, before enrolling its first participant, All of Us held 66 community engagement studios across the United States to identify community priorities for the

__________________

project. This led to the program being one of the largest and most diverse genomic databases in the world which considers not only self-identified race and ethnicity, but also dimensions of intersectionality, Watson said. Community participants are embedded in every area of governance, including IRB, ancillary studies, return-of-value events, and knowledge mobilization, he added. Sharing back results of a study goes beyond dissemination and publishing results in academic journals. Community members may not read journal articles, but they engage with social media and talk to their faith leaders, barbers, and other community members, Watson noted.

Navigating the Needs of Communities and Researchers

Transparency is critical when balancing the needs of communities and researchers and when compromising, several speakers noted. For example, when budgetary challenges arise, revealing the true amount of available money allows the community members to come together to determine what is sustainable and to solicit advice on how to identify other funding sources for capacity building, Watson said. It is good idea to keep the door open for new partners and perspectives, even after a project is underway, Henry Akintobi said. It is also critical to build in the time needed to ensure that all partners understand both the vision and the details of a project, to confirm alignment with their own visions, no matter what stage the project is in when they join. Trustworthiness and partnership require working with intention, so people feel they have buy-in and move with evidence-based action, she added. The language used matters: If not everyone involved is in alignment on what is being discussed, miscommunication can occur, Anise said.

Generating Evidence for Engagement

Researchers can consider their own personal power and capacity in the system to generate evidence that shows that engagement is necessary and makes a difference; they can then communicate this evidence to their colleagues, Anise said. The changes made to effectively engage with a community shift the lens through which researchers view engagement and how it can benefit their projects. For example, requirements of PCORI funding to include patient engagement has led some researchers to say they will always include patients even if they do not have the specific funding to do so, she added. Journal editors can play a role by requiring manuscripts to include the type of engagement conducted and its effect. “Pull on all the levers of change that are available, whether that’s regulatory, payment, [or] requirements, recognizing that the only way that a lot of people will actually start to do engagement is because there is a requirement for it,” Anise said.

Beyond measurements of knowledge, skills, and attitudes, implementation science can be used to evaluate the effect of engagement through changes in communities, Henry Akintobi noted. It is important to engage policy makers, who can translate learnings into action among their colleagues, she said. The value of engagement comes from real-time scientific feedback from the community and demonstrating that there is constant iteration during a project, Watson added. It may be necessary for institutions to value community engagement as essential, this includes through exponential increase in the budget for engagement, Henry Akintobi said.

FINAL REFLECTIONS AND CLOSING REMARKS

The final session included reflections from Kellan Baker, the executive director of the Whitman-Walker Institute, and Sandra Soo-Jin Lee, professor of medical humanities and ethics and chief of the division of ethics at Columbia University (Box 2).

Most of the ideas discussed concerning successful community engagement relies on two key ingredients—time and money—which are rarely available in sufficient amounts to researchers and communities, Baker said. Workshop participants understand how important community engagement is for good science, but to change the field, those who do not yet see the effects of community engagement need to be reached, he said.

Additional key messages heard throughout the day were summarized by Lee. Some speakers cautioned that it is important to resist hierarchical thinking and instead value the community as members and collaborators of the research team, she said. An important part of this process is building trustworthiness, relationships, and commitments of transparency by dedicating time and resources, she added. A variety of methods for community engagement help move relationships away from transactional to transformational in terms of allowing communities to have the decision-making authority and power to help shape genomics research, Lee said. Several

speakers discussed developing governance and structures to ensure that communities have independence, are compensated, and can develop their own approaches to ownership and control of data and knowledge. These practices, built on values and principles of communities, need to start early, before studies are designed, and to be carried throughout studies, Lee said.

The question of how the impact of community-engaged research is measured is critical, Lee said. What is measured needs to be what matters to that community, and it may be necessary to have a shared understanding of what the desired outcomes are and how the outcomes are defined. Some evidence-based instruments exist that map such values as trust, capacity building, and partnership, but there is room for a larger set of tools to measure effective community engagement, she said. It’s important to tailor the frameworks and tools of assessment used to each partnership. Working with the community on concepts like transparency and trustworthiness and doing this in an iterative way to build partnerships is important, Lee said. “It is clear from our discussion that the integration of community engagement is an ethical imperative to really ensure epistemic justice in the development of science, that this must be integrated in the practice of science where engagement is inextricable from what counts as good science,” she said.

REFERENCES

DISCLAIMER This Proceedings of a Workshop—in Brief has been prepared by Kathryn Asalone Shively, Joe Alper, and Sarah H. Beachy as a factual summary of what occurred at the meeting. The statements made are those of the rapporteurs or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

*The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop—in Brief rests with the workshop rapporteurs and the institution. The planning committee comprised Kellan Baker, Whitman-Walker Institute; Sandra Soo-Jin Lee, Columbia University; Natasha Bonhomme, Expecting Health, a program of Genetic Alliance; Yue Guan, Emory University; Vanessa Hiratsuka, Southcentral Foundation; Amy Lemke, University of Louisville; Sheri Schully, National Institutes of Health; Joyce Tung, 23andMe; and Joseph Yracheta, Native BioData Consortium.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Chad Haldeman-Englert, Cone Health Precision Medicine, and Chazeman Jackson, American Society of Human Genetics. Leslie Sim, National Academies of Sciences, Engineering, and Medicine served as the review coordinator.

SPONSORS This workshop was partially supported by contracts between the National Academies of Sciences and 23andMe, Inc; American Academy of Nursing; American College of Medical Genetics and Genomics; American Medical Association; American Society of Clinical Oncology; American Society of Human Genetics; Association for Molecular Pathology; Biogen; Blue Cross Blue Shield Association; College of American Pathologists; Geisinger Health; Genome Medical, Inc.; Health Resources and Services Administration (Contract No. HHSH250201500001I, Task Order No. 75R60220F34021); Illumina, Inc; The Jackson Laboratory (JAX); Kaiser Foundation Health Plan, Inc.; Myriad Genetics; National Institutes of Health (Contract No. HHSN263201800029I, Task Order No. 75N98023F00022), including All of Us Research Program, National Cancer Institute, National Human Genome Research Institute, National Institute of Mental Health, and National Institute on Aging; National Society of Genetic Counselors; the University of California, San Francisco; the University of Vermont Health Network Medical Group; and Vibrent Health.

STAFF Sarah H. Beachy, Senior Program Officer; Kathryn Asalone Shively, Associate Program Officer; Michelle Drewry, Associate Program Officer; Ashley Pitt, Senior Program Assistant; and Kingsly Mante Angua, Intern (from June until August 2024).

For additional information regarding the workshop, visit https://www.nationalacademies.org/our-work/sustaining-community-engagement-in-genomics-research-a-workshop.

SUGGESTED CITATION: National Academies of Sciences, Engineering, and Medicine. 2024. Sustaining community engagement in genomics research: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/28044.

Health and Medicine Division Copyright 2024 by the National Academy of Sciences. All rights reserved.