U looks to up diversity in its clinical trials

Minorities make up less than 10 percent of U.S. cancer trial participants.

by Kyle Potter

Hibo Guled speaks Somali, the language of her native Somalia. She also speaks Urdu and Arabic, not to mention perfect English.
The University of Minnesota plucked her from University of Minnesota Medical Center, Fairview, where she worked as a medical interpreter in order to help improve diversity in cancer clinical trials.
Guled has been working with the UniversityâÄôs Masonic Cancer Center since September to recruit cancer patients from underserved metro communities into clinical trials.
âÄúThere are so many barriers to getting them involved,âÄù Guled said. âÄúBeing in a clinical trial is the last thing that they think about.âÄù
Roughly 41 percent of people in the U.S.are minorities, according to 2010 U.S. Census data. Fewer than 10 percent of participants in cancer clinical trials in the U.S. are minorities, according to University statistics.
Congress passed the National Institutes of Health Revitalization Act in 1993 which required, among other things, that research include women and minorities as subjects.
University public health professor Russell Luepker said the diversity of research subjects has improved since the NIH requirement was instituted, but âÄúthere is a ways to go.âÄù
âÄúBecause of genetic, social and cultural differences, not all treatments work the same in all people,âÄù Luepker said of the importance of having an array of ethnicities represented.
Minorities also tend to suffer from poorer health, Luepker said.
âÄúUnless we study those folks, we wonâÄôt know what the best ways are to improve their health,âÄù he said.
For the past seven months, Guled has shadowed physicians in clinics throughout the University to make contact with cancer patients. If patients qualify for an ongoing clinical trial, she will help recruit them and address whatever concerns they may have about enrolling in research.
Sometimes itâÄôs a matter of making travel arrangements for a patient to get them to a clinic, Guled said. She provides some research subjects with vouchers for a cab ride or connects them with University transportation services.
âÄúI try to help them eliminate those issues that they have by connecting them to the right resources, and then they can open their minds to the clinical trial,âÄù Guled said.
Her work is one arm of a nationwide project, Enhancing Minority Participation in Clinical Trials, funded by a $3.8 million grant from the National Center on Minority Health and Health Disparities.
In addition to financial and time constraints, a history of abuse in research has scared many minority patients away from researchers and clinical trials.
In perhaps the most infamous incident, the U.S. Public Health Service, now the Department of Health and Human Services, conducted a 40-year-long study of poor black men with syphilis from Tuskegee, Ala. Between 1932 and 1972, researchers tracked progression of the disease without treating it or telling the subjects they had contracted syphilis.
The mistrust spurred by those incidents is still prevalent in many communities.
Guled said she tries to combat it, reassuring hesitant subjects that âÄúthis is not the time that such a thing could happen and people could get away with it.âÄù