[Ethics] Effort to Diversify Medical Research Raises Thorny Questions of Race

[tao]

A federal study aiming to collect the health information of one million U.S. residents is limited by the very problems it hopes to solve

 

It’s a summer Saturday morning and more than 160 people are packed into a windowless classroom beneath a Lower Manhattan street. Organizers had distributed the ad for the three-hour event just three weeks earlier. The goal was to gather people who identify as “Asian” on the U.S. census—and nearly everyone in the overcapacity room fits that label.

 

Attendees, the flyer says, will learn about precision medicine—a health care trend in which treatment and medication are tailored to an individual’s genes, environment and lifestyle. “Why is it that we’re all getting the same blood pressure pill, when it might work really well with one person and not the other?” event leader Colleen Leners asks the audience. Leners is the policy director for the American Association of Colleges of Nursing. Since mid-May she has been traveling across the country to lead enrollment efforts for a new federal governmentresearch project that is grounded in genetics and aims to overhaul the way health care is delivered.

 

To administer more precise care—in which headache medication would be as personalized as prescription eyeglasses—the project’s leaders say more research must be collected to represent the entire U.S. population. That is why Leners has ventured from her base in Washington, D.C., to New York City to introduce more people to the All of Us Research Program. Under the auspices of the National Institutes of Health the program seeks to collect the genetic, biographical and health information of at least one million U.S. residents over the next decade. Strict regulations prohibit the sale of this data, says Stephanie Devaney, the program’s deputy director, and the NIH can deny requests to share it with other government entities. Leners says the hope is that the program will be extended by several decades, even lifetimes.

 

In theory, All of Us could provide the deepest, most representative medical research sample to date. Studies based on this diverse pool could help pave the way for precision medicine to become the new norm in health care. But attaining such a representative group means overcoming a history of unethical research practices that have left seeds of doubt in a number of communities. It also means addressing modern-day cultural barriers that have so far stifled enrollment from certain groups, including Asian-Americans.

 

Some geneticists, sociologists and anthropologists have also warned this research could perpetuate attitudes toward race and birthplace that are not grounded in scientific or medical reasoning. Leners knows these issues must be addressed quickly to ensure the program yields sound information about race and genetics; every day, hundreds of people across the country are uploading their information onto the “All of Us” portal. [...]

 

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