An amalgam of faith, race and genetics is poised to revolutionize the medical industry and the ways scientific researchers contend with illnesses such as sickle cell disease (SCD).
This emerging fusion of disciplines has riveted a growing consortium of Black healthcare specialists, scientists, faith leaders and sufferers of various genetic disorders, who are advocating for increased awareness of precision medicine and genome editing. The field is maturing in medicine – among other industries such as agriculture and animal testing – but could potentially lead to a future where disease is permanently eradicated worldwide.
According to the U.S. National Library of Medicine, precision medicine is “an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.” On a molecular level, genome editing is an assemblage of technologies that allow scientists to change an organism’s DNA, according to the National Institute of Health.
“For the first time in our history we have the capacity to really gain an understanding of disease at the genetic and biomolecular level; that is getting down into the cell and understanding what mutations have occurred and understanding how those mutations lead to disease,” Tshaka Cunningham, a molecular biologist, told the AFRO. Those “technologies allow genetic material to be added, removed, or altered at particular locations in the genome.” Cunningham is also affiliate faculty in the School of Systems Biology at George Mason University in Fairfax, Va.
The Minority Coalition for Precision Medicine (MCPM), co-founded by SCD survivor Shakir Cannon and advocate Michael Friend, is driving efforts to catapult genome editing technology and genetic engineering to the forefront of Black healthcare initiatives. According to the National Heart, Lung, and Blood Institute (NHLBI), the organization has spent more than $1 billion researching SCD since 1972 when the National Sickle Cell Anemia Control Act was passed. However, funding still has not led to a universal cure.
Genetic editing may revolutionize the protracted course of SCD treatment and Cannon knows firsthand the medical limitations patients face. His life has been marked with painful, invasive SCD treatments and he suffered a stroke at age 3. He undergoes blood transfusion therapy every three weeks to constrain the disorder’s effect on his body.
“For the Sickle Cell Disease community, it would mean a new horizon of hope,” Cannon said. “SCD is a hereditary illness that has been well studied throughout the over 100 years since its initial discovery, but yet has been lacking new root-disease causing therapies. Gene editing provides hope that one day folks who suffer – some of which suffer daily in constant agonizing pain – from SCD may be afforded the liberty of living a happier lifestyle. Not only that, but they could perhaps look forward to living long past the median life expectancy of 42 years of age that those living with SCD are afforded.”
Although genome editing will likely become a vital element of future healthcare paradigms, Cunningham said pinpointing exactly when the science will achieve total accuracy is difficult to determine. Should researchers discover a cure for SCD and similar disorders, global disease elimination will require widespread access to treatment, just as small pox has been stamped out due to universal access to vaccines.
MCPM has substantial plans to not only pique interest among people of color, but to establish 10 regional centers to engage minorities in precision medicine and genomic research. The centers are slated to open in major cities with the highest prevalence of ethnic diversity based on data from the U.S. Census. Additionally, MCPM aims to found five sequencing centers that partner with institutions which support minority causes, such as HBCUs. They hope to have fully functioning locations by late 2020 and anticipate setting a headquarters location in Baltimore.
The non-profit also interweaves religion and ethics into their development model. Faith and religion have been cornerstones of the Black community, Friend said, and the MCPM wants to involve religious community leaders to build trust and confidence with Blacks. Moreover, he hopes religious leaders will help Blacks better understand the positive health implications genome editing may yield.
MCPM works closely with Timothy Tee Boddie, general secretary and chief administrative officer of the Progressive National Baptist Convention (PNBC). Boddie said his advocacy for precision medicine and gene editing technology is fueled by some of the principles the Rev. Dr. Martin Luther King promoted. He believes by using King’s lessons of anti-racism, materialism, and militarism as a platform, the PNBC will “stride towards eradicating racism through addressing health disparities, and economically empowering [African- American] people by ensuring that we are fairly compensated for the contributions we make in the development of new medical treatments and disease prevention.”
While MCPM touts the benefits of precision medicine and genome editing, the science also begets questions such as how scientific advances in this area will affect economics; potential adverse health risks resulting from altering genetic material, and how access to treatment will be sustainably accessed by people of disparate incomes.
“There are, no doubt, some ethical problems with the misuse of genome editing, in the same way that some people may have almost superstitious reluctance with cremation or organ donation. Again, the key is to be informed and to become more educated about all the pros and cons of such new technologies so that we can make well-informed decisions in which the ends justify the means and the benefits far outweigh the liabilities,” Boddie said.