Just What the Nurse Ordered

Elizabeth Cohn, Ph.D., uses nursing research to help communities find ways of improving health, for themselves and their children.

Several years ago, Wendy Samuels of the Unkechaug Nation reached out to Elizabeth Cohn, Ph.D., executive director of Adelphi’s Center for Health Innovation, to solve a problem. Samuels wanted a way to create health education programs for her tribe, whose population suffers from diabetes at 33 times the typical rate. Dr. Cohn applied for an engagement grant to the Patient-Centered Outcomes Research Institute and the project was funded: The Unkechaug Nation’s Initiative to End Diabetes (UNITED) started exploring and devising ways to reduce the diabetes epidemic on the reservation. “That initiative was part of a broader effort to open communication,” said Dr. Cohn, who strives to empower communities in her quest to improve healthcare on Long Island. “For prevention efforts to be relevant to everyone, everyone has to be involved in them.”

A fierce dedication to health equity and inclusion resonates throughout Dr. Cohn’s work, which spans grassroots community engagement to groundbreaking medical research. Although the basis of her work is community-engaged research, more recently it has centered on precision medicine, a medical model popularized over the past decade that customizes healthcare based on each individual patient’s genes, environment and lifestyle.

But the ramifications of precision medicine extend well beyond the scientific field. As this approach continues to evolve, healthcare providers will be able to predict with much greater accuracy which types of treatment and prevention programs will work for different groups of people. However, current human biological samples—which form the foundation of precision medicine research—are sorely lacking in diversity, leading some to speculate that precision medicine may simply replicate existing discriminatory structures in society. The original genome-wide association studies used for such research, for example, represented predominantly white European populations.

Dr. Cohn is acutely aware of these shortcomings, which produce questions that challenge ideas of biology, race, culture and society. “As we work to advance health equitably for all people in the nation, accounting for racial and ethnic populations becomes complicated,” she explained. “What does it mean to have an inclusive and diverse population that includes social constructs, such as race, and biological factors, such as ancestral variation? We are working on ways to account for the health effects of each of these, while being careful not to reify the historical damage done to minorities under the guise of ‘genetic research.’ In this research, all parties are at the table, literally, including the family portrayed in The Immortal Life of Henrietta Lacks [Crown, 2010].”

Her research draws on the Ethical, Legal and Social Implications (ELSI) program, a set of principles founded in 1990 as part of the Human Genome Project that call attention to issues like privacy and fairness, the integration of new genetic technologies and education about genomic research’s effects. “There is a small but devoted group of researchers who do this kind of ELSI work,” Dr. Cohn noted. “We’re thinking about much more than just reaching a number for our trials—we’re trying to be sure we can transport our findings to the real world and get people to make smart decisions about their healthcare.”

A recent study on the self-reporting of race and ethnicity in biological sampling compared to the U.S. Census by Dr. Cohn illuminates a complicated dimension of precision medicine. Analyzing data from over ten million individuals, she found that white and black participants were relatively well-represented in the population and in bio-repositories, whereas Hispanic, Latino, Hawaiian/Pacific Islander and Asian populations all varied significantly. Understanding how to measure representation in these studies poses a significant challenge. “We’ve never before had to account for a disconnect between how people self-identify, how society sees them and their actual ancestral (genetic) makeup,” Dr. Cohn said. “Professionals need to be mindful of these tensions—as well as our egregious history of exploiting minority populations in the name of medicine—when we design our studies.”

Dr. Cohn’s commitment to engaging populations around the idea of self-identification resulted in a series of short, straightforward videos produced by a Harlem community that answered their concerns about precision medicine honestly. “It’s important to be able to see yourself in healthcare outreach initiatives, to know that you are valued and have a say in these issues,” Dr. Cohn said. For her role in helping to create these videos, the White House honored her as a 2015 Champion of Change in Precision Medicine.

Health is more than just physical well-being, Dr. Cohn believes; it includes economic, social, political, cultural and psychological factors that work in tandem to ensure quality of life. She also dismisses the idea of an ivory tower of medicine, where research is doomed to reflect one dominant segment of the nation’s population. “We need to be sure that our research goes straight from the lab to the living room,” Dr. Cohn said, noting that lab studies typically take around 17 years to reach the general public. “When it stops somewhere along the line, ordinary people don’t benefit.”

So what lies ahead for precision medicine and other up-and-coming health treatments? Dr. Cohn is determined to continue shaping her research and practice around principles of equity and inclusion. “The only way to know what’s coming in the future is to be a part of creating it,” she said. “By championing meaningful diversity in healthcare, this work is creating the future.”