Bringing genomic medicine to underrepresented populations
As part of our ongoing discussion series, Under the Same Sky, Abner Mason, founder and CEO of SameSky Health, met with Yusuf N. Henriques, founder and CEO of IndyGeneUS AI and IndyGeneUS Global. IndyGeneUS AI is a genomics company creating the world’s largest block-chain encrypted repository of indigenous and diasporic African clinical and multi-omics data for disease prevention/detection, drug discovery and development, clinical disease management, and precision health equity. This conversation focused on how IndyGeneUS AI is using their combined experience from the FDA, the military, and in academia, to lead change and deliver high-quality, reliable disease insights that are inclusive of populations underrepresented in genetic research, while also building trust among these communities. View the recording.
During the conversation with Abner, Yusuf noted that there are many minorities, low-income populations, and communities of color that don’t trust the healthcare system or agree to participate in clinical trials. The Henrietta Lacks research and Tuskegee Syphilis study are two examples that have specifically caused hesitancy among the Black and Brown communities. Even though these both took place during a time when the laws and regulations, HIPAA compliance, and informed consent weren’t fleshed out, the historical reluctance has caused a complete lack of representation of the global population among clinical drug trials. Some 80-90% of our current drugs in the marketplace were tested by European white male participants. So how do we break through the common misconceptions, build trust again within those communities, and move forward so that these populations can be included in genetic research?
Yusuf stated that you can only build trust if you are physically in the communities. Most of the existing clinical trial sites are predominantly long established institutions with large infrastructures, but we need to move into more of a community structure. We have to start bringing the research to the patient. “We coin ourselves to be building labs in the ’hood like McDonalds,” said Yusuf. He also said that you have to have people that look like the community they are working in, to build better relationships and trust.
“If you aren’t at the table, then you’re on the menu. It’s a big problem when you have a product that doesn’t address the diversity of the global population because they weren’t included in the trial.””
According to Yusuf, precision medicine and selling gene therapy are going to be heavily reliant on the data set that AI machine learning is going to use in order to speed up drug development and biologics. If we don’t change the way that things are now, and build trust within these underrepresented communities, then we are going to have the same things happen in a different technological way. Black and Brown communities will be at the same place as they were 70 years ago, and the misrepresentation and underrepresentation will continue.
“If we live in the past, it is not a good way to build a future. You can certainly learn from the past but if we live in the past, we are not going to build the future that we want.””
IndyGeneUS is using a few different tactics to change the misconceptions and allow people to step up for future generations. They have observed that people from the baby boomer generation are in tune with their grandkids, so IndyGeneUS is trying to relay a sense of urgency and responsibility to this older population by having them focus on saving their posterity. When conversations hit home, people are able to recognize the responsibility and contribute to studies on diseases that have been ravishing their neighborhoods and family trees for generations. It gives them a sense of purpose and legacy. IndyGeneUS is also working to introduce health literacy and genomics to fifth through seventh graders in hopes that it sparks interest, defeats the historical apprehensions, and trickles up to the parents and grandparents. The goal is for underrepresented communities to feel a scientific responsibility to move innovation and build a better ecosystem that works for everyone.
“Before I leave this earth, my goal is to make sure that IndyGeneUS played a significant part in driving precision medicine through health equity among minority patients.””
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