Recent data by biotech corporation Genentech shows that approximately 40% of the U.S. population is non-Caucasian, but those 40% make up only 5 to 15% of volunteers who participate in clinical trials.
A lack of representation across age, gender, and race and ethnicity in medical trials can result in
less specialized and less effective care and treatments.
“We do recognize that there are ethnic differences in terms of tolerance to medication, toxicity, the efficacy of those medications, in terms of dosing,” said Dr. Gregory Vidal, medical oncologist with Memphis-based West Cancer Center.
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Dr. Gregory Vidal, M.D., Ph. D., is a medical oncologist at West Cancer Center and associate professor at the University of Tennessee Health Science Center. (Submitted)
On June 23, 2021, Genentech announced that they would be launching the Advancing Inclusive Research Site Alliance. It’s a coming together
of oncology centers devoted to diversifying the patient pool for
clinical research trials across the nation.
West Cancer Center was chosen as a founding partner alongside three other oncology groups across the country. The four partner clinics are working to encourage patients of all backgrounds to participate in Genentech clinical trials and taking some basic steps to remove barriers to participation.
“We must engage differently with disenfranchised patient communities if we want to ensure the most representative and effective clinical research and achieve optimal treatment outcomes for all,” said Quita Highsmith, chief diversity officer for Genentech, in a press release.
The other founding partners are located in Duarte, California; San Antonio, Texas; and Birmingham, Alabama.
The Genentech
website shows over 60 current trials testing treatments for various cancers, Alzheimer’s, asthma, diabetes, arthritis, and more.
Clinical trials use human volunteers to determine if a treatment, like a new drug or medical device, is safe and effective for people. Human trials come after a treatment has been deemed safe enough to advance from its preclinical research.
There is some risk in participating in any medical treatment, but
many patients volunteer for trials in exchange for a chance to try cutting-edge treatments, get free medical care, play a part in finding a cure for their illness, or other personal motivations.
The four founding partners are now taking some basic steps towards inclusion like providing transportation for trial participants in need and educating their own medical professionals on how to treat different types of patients on a research level and a human-to-human level. Each center is targeting their trial recruitment efforts towards a more diverse community of patients and plans to test new approaches to outreach.
“If you’re not reaching all ethnicities well, how can [Americans] have personalized healthcare?” asked Genentech’s marketing manager Ashima Sarin in a
video for their Advancing Inclusive Research.
Genentech and the founding partners have no intention of forcing participation in clinical trials or denying white patients entry into clinical trials.
They
simply hope anyone who is interested will
have an easier, more respectful, and more trusted experience.
"We do realize that it disproportionately affects one group, and we think that if we bring that group up, that everyone benefits,” said Vidal.
Genentech and its partners have faced major barriers in breaking down deep-rooted mistrust between minority communities, especially the Black community, and the medical industry. The medical industry has a long history of
unethical experimentation,
exploitation, and subpar care for Black patients and other people of color.
When asked if the social and political tensions following George Floyd’s death inspired the birth of this alliance, Vidal said, "It's always been an issue. The nidus for this coalition certainly comes from recent political issues. From the MeToo Movement, to the Black Lives Matter Movement, to politics in recent years.”
“Even bringing the whole COVID pandemic into play, and how it desperately affected one group over the other, mainly because of health issues,” he continued.
Vidal explained that COVID-19 made
healthcare disparities between racial groups more noticeable to corporations and pharmaceutical companies. Looking forward,
he said
, the gaps in healthcare seem to be becoming slightly more apparent to the public, as well. He said he believes younger generations are more understanding and that understanding is key.
“I am really optimistic about what the future looks like,” said Vidal.