When Japanese immigrant Yukie Hirsch read a letter from UC Davis asking her to participate in a clinical trial for breast cancer, its medical jargon completely mystified her.
So she decided not to participate.
Her decision is one that plays out frequently in the United States, where minorities join clinical trials and donate their tissue and other biospecimens for research at lower rates than their white counterparts.
A new UC Davis study published by the American Cancer Society found that of the 10,000 clinical trials funded by the National Institutes of Health since 1997, only about 150 focused on a particular ethnic or minority population.
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That accounts for less than 2 percent of all clinical trials, said Julie Dang, director of the Asian American Network for Cancer Awareness, Research and Training, based at UC Davis.
Low representation of minorities in trials has persisted despite considerable attention paid to the subject since 1993, when the NIH required that the research it sponsored include representation of women and minorities.
“Right now a lot of medicines are made for Caucasians,” Dang said. “We need a diverse group of people to participate in order to do better cancer research and make therapies work for everybody.”
Cultural and socio-economic barriers help explain the low minority participation in research, Dang and other experts said. Language is a barrier for Asian Americans. It is also a barrier for Latinos, who are more inclined to be recruited in a bilingual setting, according to a recent study of Latino participation in four U.S. cities.
A study published this month in the Journal of Community Genetics, led by Dang, found that Asians, African Americans and Hispanics are open to donating specimens for research and participating in trials if doctors adopt the right strategies.
Hirsch, who was diagnosed with breast cancer 18 years ago, said language dissuaded her from joining the UC Davis trial, at least initially.
“Medical words are very hard for me,” said Hirsch, 61, who grew up in Tokyo but now lives in Sacramento.
“I have wanted to help for a long time about cancer because I have so much experience with cancer in Japan and the United States, but the problem is my English is poor,” said Hirsch. “I could not understand what the letter was saying or what they wanted. So I gave up.”
Hirsch later showed the letter to a friend who agreed to be her interpreter. Once she understood the medical jargon, Hirsch changed her mind and decided to participate in the trial with a visit to UC Davis medical center March 27.
The issue of ethnic origin is a crucial one in the medical profession, since risk factors for certain diseases and reactions to therapies vary greatly from one demographic to another.
For example, Asian Americans and Pacific Islanders have the highest rates of liver cancer and are twice as likely to die from it than non-Hispanic whites, according to National Cancer Institute data. And African American males are known to recover more slowly from the side effects of prostate cancer treatment than non-Hispanic white men.
Latinos’ participation in stomach cancer trials may be crucial given that stomach cancer rates in Hispanic men are 70 percent higher than for non-Hispanic white men.
Better recruitment of Latinos for clinical trials may go a long way to targeting therapies, said Gregory Talavera, professor of public health at San Diego State University. Talavera is leading the Hispanic Community Health Study, which includes 16,415 participants in San Diego, Miami, the Bronx and Chicago. Funded by the National Institutes of Health, it is the most comprehensive study ever conducted on Latino health issues.
Researchers randomly recruited 4,000 Latinos in each city and documented why, in some cases, they live longer than the general population, and shorter in others. Each research subject participated in a free and extensive physical exam as well as a questionnaire, and were also given equipment to bring home to measure physical activity and sleep behavior.
Talavera said it’s important to study different Latino subgroups, as their risk factors for certain diseases can vary widely. For instance, he said, 7.7 percent of the people of Mexican descent who participated in his study said they had asthma, compared with 35.8 percent of Puerto Ricans.
A limiting factor that keeps Latinos and other minorities from participating is geography, Talavera said. “Universities that do clinical trials tend to be located or centered in communities that are not representative of the minority population.” he said.
“When they do research, they tend to recruit individuals from their surroundings. Stanford is an example. It’s right in the middle of Palo Alto. They tend to recruit people that are conveniently located,” said Talavera. “And the same thing happens in San Diego, where research is done in La Jolla.”
Talavera said medical practitioners that recruit for trials and for specimen collection will need to integrate themselves more deeply into the Latino community.“It will take earning the trust of the community, as well as cultural and linguistic competence, to recruit and involve individuals,” he said.
Talavera said that just hiring an interpreter will not do, because an interpreter may not understand the nuances of a given community.
“When researchers from La Jolla or Palo Alto go out to these communities, they assume – having worked mostly with middle-class populations – that Latinos understand the research. But they have to learn to bring the language down to the level of that community.”
Talavera said getting Latinos to participate in clinical trials was another goal of the nationwide Latino study. In an ongoing clinical trial, more than 60 percent of participants agreed to donate their DNA. Talavera said that a bilingual setting, from receptionist to research assistant, created an ambiance of trust which spurred clinical trial participation.
However, he believes that some of the limitations to participation are deeply ingrained in Latinos, especially those who recently arrived in the U.S.
“In developing countries in Latin America, and Central America in particular, health care is what happens when you are seriously ill and go to the hospital,” Talavera said. “The conception of prevention? That’s not part of Latin American culture. You acquire that in that second or third generation.”