Throughout the years, pharma has conducted clinical trials for medical therapies and the majority of participates were whites. The hope was that more people of color would participate in trials, but, in many cases, nothing has changed.
Right now, the therapeutics produced because of these trials will be formulated for the genomic makeup of whites. It’s only when people of color participate in these trials that therapeutics for their genomic makeup will be developed.
“But here’s the rub. Back in 2016, when we first started looking at this issue, 81% of the GWAS, which is the genome-wide sequencing data. Some 81% of GWAS data, genomic data was white. Fast forward to 2020. Now, it’s 90% of the data. You would think it would be getting increasingly diverse. It’s not, it’s getting increasingly white. And so, when we think about that, what does that mean? That means the health algorithm is going to be spitting out a treatment for me.
Say I got breast cancer. But 90% of the data are for white women. So, when I come in with my breast cancer, it might be different. My genomic makeup might be different. My experiences might be different. My environment might be different. But yet, I’m going to get that algorithm [for whites].”
Because of trials and testing being done on whites is why it is absolutely critical that Black and brown people participate in clinical trials. Medical researchers need to know how treatments work in various populations.
“We really have to start thinking about how we are going towards personalized healthcare. We’ve got to get this message out to our people so that they are not fearful to participate [in clinical trials],” says Highsmith.