Equalizing Precision Medicine and Building Diverse Data Sets Across Africa
54 Gene, a biotechnology company headquartered in Lagos, Nigeria and Washington D.C., is dedicated to including genomic data from African nationals into the databases used to inform precision medicine.
By doing this, they intend for the benefits of the burgeoning technology to equitably benefit Africans and all people around the world.
According to their website, “We are reimagining a world where precision medicine is equalized, and everyone can live longer.”
Currently, only three percent of the data used in precision medicine research comes from residents of the African continent.
Given the significant percentage of the global population who lives in or is descended from Africans, this is a serious injustice, which 54 Gene’s international team of experts wishes to correct.
54 Gene is currently focused on both non-communicable and infectious diseases. These include cancer, endocrine disorders, cardiovascular conditions, neurodegenerative diseases, and sickle cell disease. As for infectious diseases, they are interested in illnesses prevalent in African countries, including HIV, malaria, tuberculosis, hepatitis B, and Lassa fever.
Biobanking to Harness the Promise of Personalized Medicine
Personalized medicine promises to improve the effectiveness of medicines and other medical treatments for each patient by observing how various groups of people respond differently to treatments.
For example, if patients of African descent with a particular condition respond better to a different dosage of the appropriate medicine, doctors will know to adjust the dosage.
54 Gene is a commercial biobank, described on their site: “A commercial biobank operates solely for the purposes of collecting, curating, storing, and sharing data and biospecimens with commercial and non-commercial entities, for health or non-health related uses.”
They make money when other research entities compensate 54 Gene for their work collecting and aggregating the biological data.
They are interested in collaborating with entities (drug companies, academic institutions, and medical nonprofits) working to develop diagnostics and treatment solutions to improve human health.
“A data and sample access committee will review and make decisions about whether to provide access to data and samples based on availability and the objectives of the proposed research use.”
They have set up policies to ensure that African nationals will benefit from any research involving their collected samples. In the event that they collaborate with a medical research organization and receive proceeds for providing access to data, between five to 20 percent of the profits from the research contracts will go to a foundation in each country in which the research organization operates. A committee of scientists and leaders will decide where the money goes.
Also, if they are involved with a research collaboration that leads to the co-development of a new drug, they will work with all relevant parties to provide preferential access to such drugs for nationals of all African countries.
Goals of 54 Gene’s Personalized Medicine
54 Gene’s objectives include assisting with drug discovery, molecular diagnostics, and clinical trials.
Drug discovery is the process by which academic institutions and pharmaceutical companies develop new medicines. This research often starts by observing how an existing substance acts on patients’ bodies or genomes or by noticing the mechanisms by which disease progresses in the body. Including more biological data from people of African descent will aid this process for those of African heritage and all of humanity.
Molecular diagnostics involves looking at someone’s genome to diagnose their health conditions.
54 Gene works by “developing accurate and lower cost diagnostic tests to consider specific gene variants and frequencies in the African population, paving the way for accessible precision medicine for all. We are disrupting the healthcare delivery landscape by empowering patients, healthcare providers, and payers with more accurate and meaningful data that can aid clinical decision-making and significantly improve health outcomes for all.”
Finally, 54 Gene is committed to developing cost-effective, workable clinical trial solutions for patients in African nations. They do this by collaborating with local and global partners, harnessing infrastructure already on the ground throughout Africa.
They offer logistical support to partners seeking to navigate the scientific and regulatory environments of different African nations to set up and operate clinical trials.
Ensuring Patient Privacy
54 Gene does not retain personal information about the clients from whom they collect biological samples.
They ensure that they “manage their data in accordance with the regulations of the Data and Sample Access Committee. This is based on the terms of a fully executed Material Transfer Agreement, endorsed by the National Health Research Ethics Committee.”
In all instances, people who have contributed specimens to the 54 Gene biobank can ask 54 Gene to withdraw their samples at any time, and 54 Gene will honor those requests and destroy the specimens.
Recent Coverage
54 Gene has most recently been featured in TechCrunch, Bloomberg, and Business Insider, in articles highlighting the scientific and humanitarian need for their approach to human diversity in personalized medicine.
They have also been recognized as one of the World Economic Forum’s Technology Pioneers of 2021, and their CEO, Anasi Ene-Obong, was featured in TIME Magazine in the same year.
The future looks bright for 54 Gene, and they remain committed to including African nationals and their descendants in lifesaving research into personalized medicine.
TROORA MAGAZINE | APRIL 2023
WRITTEN BY CRISTINA DEPTULA
PHOTOS COURTESY OF 54 GENE
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