SPH Professors Examine Breast Cancer Genetic Risk Disclosure Methods
Catharine Wang and Julie Palmer are leading an NIH-funded study to assess alternate communication modalities for sharing breast cancer genetic test results with African American women.
Precision medicine has spurred a new era of medical care that enables researchers, patients, and providers to work together to develop individualized care tailored to a person’s genetic makeup, environment, and lifestyle.
Despite substantial progress that researchers have made in genetic data collection and analysis, one challenge that remains is understanding how to effectively and ethically disclose genetic research results to study participants—particularly participants of minority populations that already experience inequities in access to healthcare and health information. Sharing this data with participants can potentially enable patients and providers to make more informed and targeted medical decisions that yield direct benefits to a patient’s health.
Two School of Public Health researchers are leading a study funded by the National Institutes of Health that aims to test scalable communication methods for sharing breast cancer genetic research results with African American women, a population that faces the highest risk of serious health impacts from the disease.
Julie Palmer, professor of epidemiology and director of the Slone Epidemiology Center, and Catharine Wang, associate professor of community health sciences, are examining two different approaches to disclose these genetic test results: via telephone by a licensed genetic counselor, and through an online, self-guided modality that patients can access directly, with the option to follow up with a genetic counselor by phone. They selected participants enrolled in the Black Women’s Health Study, an ongoing prospective cohort study (of which Palmer is a founding leader) on the disproportionate health challenges of Black women across the United States, including higher rates of breast cancer at young ages, stroke, lupus, and diabetes.
Previous research has assessed genetic testing disclosure methods in existing large-scale studies, but few of these studies have concentrated primarily on people of color.
“The grant focuses on scalability, but what’s driving this study are inequities in access to genetic information, especially with minority populations,” says Wang, whose research spans public health genomics, health communication, health literacy, and cancer prevention and control. “We want to understand the barriers that may preclude access for certain subgroups of the populations, and identify ways to circumvent or mitigate those disparities.”
When sharing this sensitive personal data, it is important to maintain an ethical balance that doesn’t violate a patient’s privacy, autonomy, and personal best interests, or cause undue stress or harm, Wang says.
“Genetic research has always elicited concerns about conveying information to people that may be misunderstood or potentially emotionally traumatizing,” she says. “There is also concern about crossing the line between research and clinical care, and how we can disclose this information in a way that derives benefit for participants as something that can be potentially important for their own medical management—but also not cross the boundary of providing medical care.”
Testing alternate communication modalities for sharing this genetic information will also glean insight into reasons why African American women may choose not to seek their genetic test results. The traditional model for returning this information is face-to-face with a genetic counselor, who discusses the results with participants before suggesting follow-up care with a medical provider. But previous research suggests that African American women experience varying preferences for the way in which this information is disclosed to them.
“We hypothesize that there may be increased engagement if genetic information is provided in a self-guided, online manner,” Wang says.
Lower interest in genetic testing, however, does not seem to be the reason for lower engagement by minority groups, she says. “Surveys show that their interest and willingness to do the testing is equally high, if not higher, in comparison to whites, but testing behaviors and uptake among certain subgroups is still significantly lower.”
Ultimately, Wang says, she and Palmer hope to understand three things: “Whether the modality of delivering this information is sufficient for increasing access to genetic information; if there are other factors that preclude African Americans from learning this information; and how we can increase engagement and benefit by learning information that can have major implications on their health.”
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