Faith-based REsearch and Economic Development On precision Medicine project
Nearly 90% of all pharmaceutical drugs provide a survival benefit of less than 6 months and side effects that decrease quality of life. Given that minorities participate significantly infrequently in drug clinical trials, the impact of drug treatment on underrepresented populations remains unknown. Furthermore, members of minority communities are currently underrepresented in databases that inform pharmaceutical research and development and are less involved in the economic empowerment from resulting businesses.
Precision Medicine approaches present an opportunity to design various disease treatment interventions based on each individual’s genome potentially resulting in improved survival and quality of life. The Minority Coalition for Precision Medicine looks to rectify this problem with a 3-tier plan for increased global minority participation in genomic studies, development of targeted disease specific treatments and business enterprise involvement. Our multi-faceted team of community advocates, leaders within the faith-based community, minority researchers and practitioners of genomic science could facilitate the diversification of genomic databases, allowing them to become more heterogeneous and representative of global racial/ethnic diversity, thus improving the health and financial outcomes of minority communities and the impact of Precision Medicine in the future.
In order for precision medicine to reach its full potential, we believe that, in the future, through scientific research and discovery, we will find a way to cure deadly diseases (like cancer for example). Cancer is such an individual and specific disease. Each instance of cancer is unique, based on a person’s individual genetics, lifestyle, and history of environmental exposures. Therefore, understanding an individual’s genome and how it relates to their potential to develop diseases like cancer will be more important than ever before. We recognize the tremendous potential of the emerging field of Precision Medicine to help us gain new insights and, ultimately, win the battle against diseases like cancer. However, it will be of the utmost importance that all demographics of Americans have access to and participate in genomic studies if the full potential of Precision Medicine to impact human disease is to be realized.
The racial and ethnic diversity of the United States and many developed countries is steadily increasing. Indeed, it is anticipated that the United States will become a “majority minority” nation by population within the next 50 years. However, despite these trends, the numbers of minorities that have access to and participate in genomic testing remains woefully low. For example, many of the current publicly available genomic databases are plagued by an overabundance of homogeneity, with in some case more than 90 percent of the genomes represented in these data sets being from non-minority populations. A huge disparity exists in terms of minority populations participating in genomic testing and taking advantage of new medical advances in the age of Precision Medicine. Part of this disparity is undoubtedly historical, as trust issues persist between certain US minority groups and the medical and research community given past transgressions such as the Tuskegee Syphilis Study. Yet it cannot be denied that educational and economic factors may also be playing an important role in maintaining this disparity. In addition, despite gains in recent years, the median income in the average minority household still lags behind that of non-minority households which may make the out-of-pocket costs of voluntary genetic testing (which can be $100 or more per individual in most cases) less appealing for minority populations.
We are committed to solving this problem through a transformational and multi-faceted community engagement and education program called the Genome9 Faith-based REsearch and Economic Development On precision Medicine (FREEDOM) Project. The broad goals of the FREEDOM Project are to enhance the engagement, education and training of racial and ethnic minorities in Precision Medicine, increase the overall diversity of genomic databases, and fully empower minorities to pursue economic opportunities in the new industries that the era of Precision Medicine will create. Our approach is unique because it partners scientific experts with the Faith-based leaders, who have gained delicate trust in the minority community, community advocates and industry partners. The educational arm of the FREEDOM Project will be sustained by the faith-based organizations that have ongoing health ministries but previously lacked the specific training pertaining to Precision Medicine. The business enterprise will sustain the targeted therapeutics through leading grassroots efforts will soon be better positioned to compete for government, corporate and private funding. This will be a historic effort that directly benefits and leaves a lasting positive effect on the economic and physical health of minority communities, and all communities, throughout America and the world.
Through this transformational and multi-disciplinary community engagement and education program, the Minority Coalition for Precision Medicine will bring together minority community leaders, scientific researchers, celebrities, and members of the Faith-based non-profit community to exquisitely target minority populations across the country in order to educate them about the emerging field of Precision Medicine and encourage their personal participation in current and future genomic studies.