Increasing Minority Representation in Gene Editing Technology Research
Historical mistreatment of minorities in scientific trials is well documented in the United States.
CRISPR/Cas9 gene editing technology has immense therapeutic potential, from cancer immunotherapy to the correction of single gene disorders.1 As with other modern treatment innovations, racial and ethnic minorities are disproportionately excluded from the relevant clinical studies. In an article published in the AMA Journal of Ethics,2 Clara C. Hildebrandt, MD, and Jonathan M. Marron, MD, MPH, offered commentary on the consequences of disparate access to somatic gene therapies.
Historical mistreatment of minorities in scientific trials is well documented in the United States, perhaps most notably in the Tuskegee Syphilis Study. The legacy of this trial and similar research transgressions persists: African Americans and other minorities continue to have low enrollment rates across clinical studies of all disciplines.3 In fact, minority groups often report concerns that gene editing technology could be used to exacerbate health disparities.4
As a result of historical biases and modern mistrust, minority patients are also underrepresented in the genetic databases that serve as resources for new research trials. Survey data indicate that just 3% of participants in genome-wide association studies published in the genome-wide association studies catalogue are of African descent.5 Without substantial genetic information from which to draw, scientific research has failed to achieve adequate understanding of the clinical variants in minority populations. Additionally, existing disparities in healthcare and socioeconomic status are likely to inform further inequity in gene therapy access.6
To address these disparities and foster diversity in clinical trial enrollment, researchers suggested partnerships between medical institutions and minority communities. These partnerships must foster “a sense of inclusion and trust” to overcome decades of mistreatment and resource misallocation. The National Human Genome Research Institute has developed several initiatives dedicated to engaging minority groups and assessing disparities in genomic research.7 The medical community should use these groups as blueprints for educating the public and fostering participation from historically underrepresented communities.
The medical-scientific community must work to overcome historical barriers to minority access to novel research and new therapies. CRISPR/Cas9 somatic gene therapy represents a new frontier in human genome research and has the capacity to address health outcome disparities, so long as minorities are given access to it.
- Wirth T, Parker N, Ylä-Herttuala S. History of gene therapy. Gene. 2013;525(2):162-169.
- Hildebrandt CC, Marron JM. Justice in CRISPR/Cas9 research and clinical applications. AMA J Ethics. 2018;20(9):E826-E833.
- Buchanan A, Brock D, Daniels N, Wikler D. Positive and negative genetic interventions. In: From Chance to Choice: Genetics and Justice. Cambridge, UK: Cambridge University Press; 2007:104-154
- Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S. Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med. 1999;14(9):537-546.
- Rainie L, Hefferon M, Sciupac EP, Anderson M. American voices on ways human enhancement could change our future. Pew Research Center. http://www.pewinternet.org/2016/07/26/american-voices-on-ways-human-enhancement-could-shape-our-future/. Published July 26, 2016. Accessed August 17, 2017.
- Popejoy AB, Fullerton SM. Genomics is failing on diversity. Nature. 2016;538(7624):161-164.
- Wang J, Zuckerman IH, Miller NA, Shaya FT, Noel JM, Mullins CD. Utilizing new prescription drugs: disparities among non-Hispanic whites, non-Hispanic blacks, and Hispanic whites. Health Serv Res. 2007;42(4):1499-1519.