Sources: Press of Atlantic City/The Conversation
Its a great day when you find a piece of clothing that fits perfectly. Now imagine a world where every shirt was the same size, every shoe was the same design and there weren’t even differences between the cut of men’s and women’s clothing. Getting dressed in the morning would be clunky, and clothes would be uncomfortable. Yet, this lack of options is more or less the reality of medicine today.
In 1977, the U.S. Food and Drug Administration released a set of policy guidelines that explicitly banned “women of childbearing age” from participating in clinical trials of new drugs. Though done out of a fear of causing birth defects, the result was that for more than a decade, new drugs were going to market with little information about how they might affect women. Due to systemic biases, research has found that people of color are routinely underrepresented in clinical trials today, too.
In recent years, a number of researchers across the U.S. — like Julia Liu, a professor of medicine at Morehouse School of Medicine — have been trying to figure out ways to improve the diversity of clinical trial participants. Part of the problem, Liu explains, stems from a myth within medicine that Black people don’t like to participate in medical research due to the history of abuses the U.S. medical system has inflicted on African Americans, like the infamous Tuskegee Experiment.
But when Liu began running her own trials on a new prostate cancer test at a hospital that serves a majority-African American population, she found quite the opposite. “It turned out that just about everyone I asked said, ‘I would love to do that — half of the eligible patients agreed.” Black patients were just as eager to participate in research as white patients, and Liu feels that a big reason for lack of diversity in clinical trials is that they are mostly run out research hospitals in wealthier, whiter cities, not out of hospitals with diverse patients.
According to the research of Jennifer Miller, a bioethicist at Yale University, only 4% of trials in recent years used a representative population, but she is optimistic. Women are now much better represented in trials, and with regard to equal racial representation, “that 4% does tell us is that it’s possible to get this right.”
Once researchers do the work, health care providers can choose which drugs are likely to work better and have fewer risks for different patients based on their individual demographics. Better representation is a start — anyone who has been lucky enough to get custom-made clothing knows just how well it can really fit.
This is the idea behind precision medicine. This approach to medicine would incorporate basic biology, a person’s individual genetics and life history and the wealth of all existing medical research – precision medicine is an information and computation problem. To work, it needs good data – the representative data missing from clinical trials.