However, a recent review of lung disease studies found only five percent of publicly funded research included patients of color.
The Problem Recruiting
One reason it has been difficult for scientists to recruit ethnically diverse study participants is that researchers have misused data in the past. Fox cites a notorious example from 1989, when Arizona State University researchers used blood samples from the Havasupai tribe to study schizophrenia and inbreeding without patient permission. The controversy snowballed until the Navajo Nation, representing one of the largest tribes in the United States, put a moratorium on genetic research.
The decades-long federal study of the affects of untreated syphilis in African-American men is another well-known example of the abuse of a patient population.
Researchers with the U.S. Public Health Service told 600 male participants they were being treated for “bad blood,” but the true purpose of the study was to observe the progression of untreated syphilis. Those who had the disease were not told they were infected, and they were not offered penicillin when that became the standard of care. The study went on for 40 years, and only after media reports exposed the experiment did major federal reforms in patient consent occur.
There may also be problems on the researcher side of things. Last November, Nature published a report stating that from 1985 to 2013, "under-represented minorities were awarded NIH grants at 78–90% the rate of white and mixed-race applicants every year."
The two scientists who obtained this data said the disparity in funding could impact the quality of research.
...Burchard and Oh worry that a racial divide could develop between researchers and the people they study. Burchard notes, for example, that a lack of diversity among trial participants may have caused problems for two drug companies that produced an anticlotting drug that had reduced efficacy in East Asians and Pacific Islanders. The attorney-general of Hawaii filed a lawsuit against the companies last year for failing to disclose the issue. “It’s a public-health problem,” he says.
Broader Genetic Data Could Help Vulnerable Communities
We recently reported a story on asthma that illustrates what happens when studies don't include key populations. A research team at UCSF is compiling genetic information on the three communities that suffer most severely from asthma -- African- Americans, Mexicans and Puerto Ricans. There's very little asthma-related genetic information on these populations, which means current treatment options aren't tailored to the most vulnerable communities. The hope is that broader genetic data will eventually lead to ethnic-specific treatment options that would reduce health disparities.
“The longest studies do not really include very many minority populations,” said UCSF geneticist Marquitta White, "which means that most patients aren’t getting the best care, because we don’t really know what the disease etiology is in their particular population."
But collecting the data is expensive and requires a lot of laboratory time.
A Democratic Solution
Fox, from the TED talk, has started a new project called IndiGenomics. The goal is to collect DNA information on indigenous people by educating and inviting them to partner with scientists on studies, rather than be subjects of gene research. In other words, Fox's answer to the challenge of upping participation is citizen science.
Onstage at TED, Fox pulled a rectangular box, called a MinION, out of his pocket. He said the device, a mini gene-sequencer, is one-10,000th the size of a traditional laboratory genome sequencer.
“It's not tethered to a lab bench with extraneous cords, large vats of chemicals or computer monitors. It allows us to de-black-box genome sequencing technology development in way that's immersive and collaborative, activating and empowering indigenous communities ... as citizen scientists.”
Fox believes the small devices will be less intimidating than traveling to a laboratory. Plus the technology is accessible and easy to use.
He and his team plan to educate indigenous communities on how to use the palm-sized devices to collect personal data. Fox hopes this will prevent indigenous people from being left out of the genetic revolution.