A Vision For Change
Two leading advocates propose a 1-billion-dollar investment over the next ten years in hopes to resolve issues of trust and increase minority participation in research dramatically. See their plan below…
The Health Ministries Network (HMN) and the Minority Coalition for Precision Medicine (MCPM) are two organizations that work simultaneously to conduct awareness and build trust by utilizing trust agents within underserved/underrepresented communities. The Progressive National Baptist Convention (PNBC) has agreed to participate and support our efforts in this regard. PNBC brings the national network of churches and the legacy of Dr. Martin Luther King’s work to this effort.
In order for precision medicine to realize its promise of improving the treatment of disease for all, it is imperative that participation of racial and ethnic minorities be maximized in order to deliver comprehensive and heterogeneous genomic data sets for researchers to query and conceive new discoveries. Currently, it is estimated that 96% of individuals included in recent genome-wide association studies are of European descent. We believe that the lack of participation by diverse communities in precision medicine represents a major problem both within the United States and around the world that threatens our collective ability to maximize positive health outcomes for all patients in the future.
To address this problem, we are proposing an initiative called the Genome9 FREEDOM Project that brings together a multifaceted interdisciplinary team of racially and ethnically diverse community leaders, faith-based leaders, scientific researchers, and industry partners to engage, educate, empower, and encourage minority populations to participate in precision medicine. We are confident that this unique, first-of- its kind initiative will help fulfill the promise of precision medicine to impact human health by enhancing minority participation in genomic studies, such as the “All of Us” Research Program of the National Institutes of Health, and also allow for an increase in awareness & conversations centered around personal genetics in collaboration with the Personal Genetics Education Project (pgEd) within the Department of Genetics of Harvard Medical School.
The business of building trust within the minority community is of utmost importance. It will require tremendous input and involvement in three major areas:
1) Community Engagement
This will require the establishment of ten regional centers of excellence for minority citizen engagement in genomic research and precision medicine across the United States in 10 major cities with the highest population of ethnic diversity based on US Census data. Each center will have a staff of trained scientific lay-communicators, genetic counselors, clergy, and community outreach specialists to educate communities in their local area. Each center should work closely with local churches and faith-based organizations to provide safe and trusted spaces for knowledge sharing about genomics and the importance of precision medicine.
It will also be crucial to develop print and online media tools specifically for communicating our message to minority populations, in addition to novel participant tracking tools that will help us use the most advanced data and analytics methods to refine and maximize our outreach and education efforts.
2) Capacity Building
Building on the community engagement, five new sequencing centers will need to be established to increase capacity. These centers should be founded in partnership with minority-serving institutions (such as Historically Black Colleges and Universities, and Hispanic Serving Institutions). Each center should have the capability and accreditation to offer clinical genomic testing, as well as strong research facilities to pursue translation science and assay development.
3) Economic Development
Each center should operate as a private, for-profit, entity adequately staffed for the anticipated population it should serve. Partnerships with leading biotech and consumables suppliers will need to be established for initial set up, to ensure each center is appropriately equipped and supplied to achieve its goal.
A biotechnology research, development and commercialization fund will be set up, to help fund entrepreneurial ventures related to precision medicine, pharmacogenomics, and targeted drug discovery and development. This will require partnerships with the existing pharmaceutical and biotechnology venture capital community, which has historically not invested generously in projects from minority scientists. These partnerships will provide training in entrepreneurship for scientists and business professionals from minority backgrounds wanting to start up new companies around precision medicine.
We believe that this three-step plan will address the worrying lack of diversity in current genomic research. Importantly, we also believe it will help minority representation sustain itself and play a proactive and important role in pursuing precision medicine to truly benefit all.
“Who should pay for this mess? Private sector, Government, Scientist/Researchers they all should contribute. Our trust to be sinking to an all-time low but the Genome industry could revive relationships like cell phones have done for Communications. That’s why our upcoming meeting at Harvard is so critically important. Everyone will be in the room and concrete solutions will emerge. We are taking on trust and relationship building like no one has ever attempted or successfully accomplished, but, every key component must be at the table. A better way to put it would be that we are on the Front Line!
– Michael Friend
Coincidentally, as a patient who lives with Sickle Cell Disease, which is coined as being the first molecular illness ever discovered, I’m proud to be among the few leading the charge in this new genomic era of medicine although knowing it’s going to cost a pretty penny to gain maximum level trust & participation”
– Shakir Cannon