Mind the Gap: Increasing Diversity in Research Will Open Doors for Precision Medicine

Science is known for its rigor. Exemplary experiments are systematic and controlled, and, in fields such as medicine, examining large populations is key. Meticulous science has translated into medical advances that are coming at a furious pace. But when it comes to serving minority populations, research has missed the mark. Health disparities have developed, and the risks of this gross oversight have become all too apparent.

For example, a 2007 study found that while Albuterol has been traditionally successful in providing immediate relief for asthma attacks in children, 47% of African-American children and 67% of Puerto Rican children that had asthma did not respond to the drug. Developing and marketing a drug that is largely ineffective in populations that are among the most susceptible to asthma is directly tied to a lack of diversity in the world of scientific research.

The health needs of minority communities in the United States are clearly underserved, but for one researcher, Dr. Chanita Hughes-Halbert of the Medical University of South Carolina, precision medicine offers an opportunity to help. “We’re...excited about precision medicine because it [provides] an opportunity to promote equity by race and ethnicity through individualized care,” she said. Dr. Hughes-Halbert expanded on this at the  Frontiers in Precision Medicine symposium held at the University of Utah on March 16.

The formula to address the issue is simple in theory but difficult in practice. Medical researchers need to understand the factors that influence health, the indicators of an individual’s health status, and key health trends. Dr. Hughes-Halbert has dedicated her life to understanding how sociocultural, psychological, genetic, and environmental factors affect health in minority populations. Her goal: to improve health equity.

And yet, as long as financial barriers exist, only some will benefit from precision medicine, points out Dr. Rick Kittles, founding director of the Division of Health Equities at the City of Hope. In 2018, molecular diagnostics — analyzing biomarkers to identify risk for disease — placed high on a list of 10 technologies that hospitals would be most likely to invest in for the first time. But it is yet another example of a technology that requires two things that not everyone will have access to: data and money. The lack of data could be solved by more studies with samples from a broad spectrum of patients, consciously including minority populations. That still leaves the money problem, including not only money for research, but also money to implement the new technology.

This is a new era, one where of precision medicine will begin to take an active role in clinical decision making. But even if the precision technology were to become broadly available, which hospitals and which communities would realistically benefit? This is the question posed by Dr. Kittles. After years of unconscious bias in research, and overlooked information in minority health issues, the answer may be uncomfortably obvious: the “haves” are more likely to see improvements in medical care than the “have-nots”.

People who say precision medicine has no utility for them fall into the camp of being traditionally excluded from research that is advancing medicine. Historically, scientists’ knowledge of genetics has mainly come from investigations with populations of European ancestry. Dr. Kittles warns that this significant lack of diversity in studies may “come back to haunt us in ways that are going to be compounded later.” New technology will continue to emerge. If research continues to exclude diverse populations, the rift will only continue to widen.

Minority communities are biologically diverse and should be embraced, not ignored. The U.S. was built on immigration, and thus has patterns of genetic variation that differ. Ancestry is key to understanding genetics at the individual and population level. “We’re learning to appreciate that diversity, that spectrum of genetic background that is represented in this melting pot we call the United States,” Dr. Kittles said. Population health will improve when research reflects diversity, and the benefits of personalized medicine are made equitable.

By: Kamryn Broschinsky

Kamryn Broschinsky is a Communications Assistant for University of Utah Health.