Precision medicine, sometimes called personalized medicine, is a model of health care in which care, treatment, and medicines are customized to the individual—tailored, extraordinarily, to a person’s genetic code.
Precision medicine is lauded by some medical professionals and hopeful patients for its potential to elevate individual health, but some critics ask if precision medicine is being cast, to the cost and detriment of some groups, as a miracle cure.
Two Washington University professors will examine precision medicine by considering the impact of race and ethnicity, and health disparities correlated with racial and ethnic identity, in a panel organized by the St. Louis Academy of Science on Tuesday, Sep. 1. They discussed their take on the ethical implications of the country’s push towards precision medicine on “St. Louis on the Air.”
“It’s not just individualized medicine, but it’s individualized medicine which addresses the central issues that surround our health: social issues, environmental issues—more than just our genetic endowment,” said Dr. Will Ross, associate dean and director of the Office of Diversity Programs at Washington University School of Medicine.
Ross noted that there are many social determinants of a person’s health: income, employment, housing, and personal life play into individual medical history in ways that are only just being understood. They also affect population health disparities of the sort detailed in For the Sake of All, a study headed by Washington University public health researcher Jason Purnell, which found astonishing 15 and 18-year differences in life expectancy in nearby St. Louis zip codes.
“What we can do is actually build an infrastructure to capture this information,” Ross said. Early this year, President Obama asked Congress to fund a $215 million research initiative in precision medicine, $200 million of which Congress approved in June in an appropriations bill . Professor Sarah Gehlert, who teaches on racial and ethnic diversity at Wash U.’s George Warren Brown School of Social Work, said that the initiative would recruit individuals and their health information to begin filling that infrastructure.
It sounds like a good start—and it is. But the initiative isn’t without its problems.
Funding for enrollment is still quite small; even the $215 million proposed by the President only adds up to $215 per participant. And although costs have gone down, Gehlert said, “it’s still about $1000 to sequence a genome. Will that limit who is in the cohort? And also, in terms of when we’re ready—when we have precision medicine—will public insurance pay to have some of this testing done?”
Ross outlined the costs for one of the diseases for which precision medicine is most promising: cancer. About 600,000 people a year will die a year from cancer, he said. “If we could identify those individuals and provide precision medicine—this is at a cost of perhaps $100,000 per person. So we’re talking about a $60 billion expenditure.”
There has to be a proportionate use of resources, Ross continued. And while the numbers do seem to price precision medicine out of the market, he says the market will simply have to change.
“We will adjust,” he said. “We can’t spend three trillion dollars a year and 18% of our GDP on health, so yeah, it will adjust. But while it’s adjusting, as Professor Gehlert was saying, we have to make sure we’re looking at the population that really has the greatest need.”
Gehlert and Ross are not so sure that the present initiative is, in fact, focusing on those who may benefit most from precision medicine.
“The way it’s set up now, the way it’s envisioned, much of the information would come from an electronic health record,” Gehlert said. But many patients, particularly those of low income, may not have a cohesive medical record to contribute; many may not even have electronic records, as they may have been seen in many different emergency departments rather than regularly attending a doctor or clinic.
It’s impossible to get a full and detailed record of an individual’s life with patchy health records. And as the push for precision medicine has gained strength, researchers have realized that many of those whose records are already on the books are more affluent, and tend to be white.
The President’s research initiative must diversify, Gehlert said. “This million-person group needs to be representative, and it needs to include people who are experiencing disparities.”
Expanding that sample is crucial for detailed evaluation of epigenetic effects—that is, the way genes are modified by a person’s environment. Genes don’t exist in a vacuum, and nor does a person’s social milieu, Ross explained.
“We know that our healthcare contributes to only 20% of health. The rest of those factors include our environment—the toxic environment we live in—our behavior, as well as social and economic factors.” Focusing on marginalized groups, who often live in such toxic environments, is necessary if precision medicine is going to fulfill its potential to improve individual health.
“Unless we address those groups that are disadvantaged, that are marginalized, then we won’t have a societal impact,” Ross said. “We’ll have greater expenditure without really moving the needle in terms of making America healthier.”
An Evening with the Experts: DNA, Personalized Medicine, and You!
- Tuesday, September 1, 5:30-9:30 p.m.
- CORTEX Innovation District, CIC@4240
- 4240 Duncan Avenue, St. Louis, MO 63110
- Register here
St. Louis on the Air discusses issues and concerns facing the St. Louis area. The show is produced by Mary Edwards and Alex Heuer and hosted by veteran journalist Don Marsh. Follow us on Twitter: @STLonAir.