Precision medicine or pharmacogenetics, is the study of a how genes affect a person’s response to drugs. Most, if not all, genetic research is conducted using the genes of white people. Are people of color being deliberately left out of genetic research? Can black and brown people expect to reap the benefits of genetic medicine or are we being left behind? Are minorities refusing to participate in medical research or they are being passively excluded.
Precision medicine needs minorities. Genetic diversity is critical to understanding how drugs work in the human body and why some drugs work on some but not on others. Limiting genetic research to people of white European ancestry limits the potential of genetic medicine to benefit all people. This only exasperates the already growing disparity between medical care for whites and minorities.
A 2009 report issued by the National Institute of Health (NIH) warned that the racial make-up of these studies were badly skewed. People of European ancestry were represented at 10 times the rate of all other groups combined. The report’s warning was clear, “to avoid the genetics science community from contributing to healthcare disparities, it is important to adopt measures to ensure that populations of diverse ancestry are included in genomic studies.”
The answer as to why people of color are being left out is complicated and simple, cultural and historic. First scientist need to control the variables in the research group. Thus, using a single group makes the research easier because the variables are accounted for and understood. Introducing more and different genetic groups complicates and slows down the research. Historically Black people and other people of color are not exactly trusting of the “white man’s medicine.” There is long and well documented history of blacks and minorities being mislead and experimented on my white doctors.
The National Institute of Health (NIH) has spent over $30 billion tax payer dollars on medical research. Until recently little or none of that money has been
directed to minority populations. As a result, introducing genetic diversity into the field has been difficult if not impossible.
Dr. Esteban Burchard of the University of California San Francisco has applied for federal funding eleven times and was turned down every time. He came to realize that there was a great white wall between him and federal research dollars.
Burchard and his colleagues decided it was time to examine the NIH’s diversity record. Using a Freedom of Information request Burchard discovered that scientist of color have been nearly excluded from federal research funding compared to white scientist. This pattern goes back thirty years. According to Burchard black scientist are ten percent less likely to get funded, Asian scientist are eight percent less likely and Hispanic funding requests are not even recorded by the NIH.
“Money is just part of the problem,” says Burchard. Genetic research projects are subject to a peer review process by NIH scientist. “We’ve demonstrated that the majority of those scientists are white males.” He went on to say that often times these scientists may not have an understanding of differences between racial and ethnic groups. “Over the last thirty years there is a consistent bias in who gets money to do federally funded research.”
A lack of minority scientist results in what Burchard calls the “safari” affect. “This is where people come into a community, take samples and then depart. There is no interface between the scientist and the people of the community being studied. That creates a tremendous distrust.” Burchard believes that the lack of minority scientists is a primary obstacle into minority medical research. Burchard also pointed out that there is pipeline problem. “Percentages of minority physicians has not increased since I started medical school in 1990.”
“We need minorities. Not only scientist, but physicians, health care providers and stake holders in the community at the table when the research is being designed. Not as an after-thought once scientist get the money.”
In response to Burchard’s and the criticism of other professionals the NIH, under the Obama administration, increased funding for
minority genetic research. In January of 2015 the Precision Medicine Initiative (PMI) or “All of Us” worked to enlist one million minority volunteers into genetic research. PMI’s goal was to increase the participation of minority and lower socio-economic communities.
“But if you’re looking for a difference between the Obama administration and the current administration, race and ethnicity has been taken off the table,” said Burchard. It should be noted that funding for the NIH was increased by $2 billon as part of a budget plan for fiscal 2017. The PMI received $320 million of that funding.
The question of race and genetic research is extremely sensitive. Any type of research done on minority people can be misleading or used to bolster claims of racial superiority. In the past medical scientist have published documents that show a genetic link between skin color and intelligence or athletic ability. None of which stand up to unbiased scientific scrutiny. This may be why genetic research into minorities is a taboo topic.
“A lot of non-minority scientists are afraid to use the term race,” says Burchard. “People have used the term genetic ancestry. I think companies like 23andMe and Ancestry.com and others have made it ok or given permission to talk about ancestry and differences. But people are afraid to talk about race and ethnicity. I certainly believe that scientist are afraid to talk about it. Physicians use it all the time but scientist do not.”
At UCSF Burchard is studying asthma in black children. His research revealed that previous genetic research into asthma excluded people of color. According to Burchard this research has nothing to do with the genetic susceptibility to asthma in African-Americans. Black people are twice as likely to die from the condition. This is important because genetic research depends on understanding the genetic ancestry of the research subjects. Minority people cannot benefit from advancement in genetic medicine if their genetic ancestry is not studied.
To highlight how genetic differences can make a drug successful Dr. Burchard talked about a new cholesterol lowering medicine. “The gene for the latest cholesterol medicine was completely missed in whites. But when they looked at African-Americans it was found because the gene had a higher frequency in African-Americans. But once they developed
the drug it worked equally well in African-American, white, Asian, blue, green or purple. That is a great example of how genetic diversity that exists in all populations can be used to benefit everyone.”
Another example is the drug Plavix. Used to treat heart attacks and strokes, this drug needs to be activated by a specific gene. According to Burchard fifty percent of Asians and seventy percent of Pacific islanders do not have that gene. The drug has no affect when prescribed to this population group.
Another area of genomic medicine that must be understood is epigenetics. Genetic research must examine environmental factors and their impact on genes. Burchard pointed to his research designed to account for social and environmental factors that contribute to poor health in minority communities.
Epigenetics is the study of how social, environmental or genetic factors alters DNA and affect how genes operate or are expressed. Burchard’s research asks the question, “what are the biggest driver of these epigenetic changes? Is it genetics or social or environmental factors that correlate with race and ethnicity?” Lower socio-economic groups may live in areas with poor air quality, have a poor diet or have other cultural factors that affect health. According to Burchard, “There are a lot of things that correlate with race and ethnicity, socio-economic status, social class, where you live and environmental factors.”
But what does the future hold for minority genetic medicine? Will the situation improve? Burchard believes that medical and science advancements are not going to benefit minorities as much as they should. “I think the NIH is trying to change that. I know for a fact they are trying to change it. But the current climate is terrible.”
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