Latinos are the fastest growing population in the United States and are expected to represent one in five senior citizens by 2040. But they currently are sorely underrepresented in research studies, which one UCSD professor considers "a profound ethical and public health problem."
The need to improve the informed consent process for Latinos was a topic in a recent Successful Aging newsletter from the UCSD Stein Institute for Research on Aging. Latinos now make up 16 percent of the U.s. population and are expected to double and triple in numbers in the coming decades. However, that group only accounts for 7 percent of participants in NIH-funded research projects and 2 percent of FDA clinical trials.
This makes it difficult for researchers who have little data on how certain drugs and other treatments work in Latinos. This is also true of drugs for diseases of aging, such as dementia and Alzheimer's disease.
"Previous studies have indicated that because of their greater propensity for obesity, this group might be at a higher risk of developing dementia and Alzheimer's disease, which Latinos tend to get a couple of years earlier than the rest of the population," according to the article published last March.
Some speculate the lack of participation is at least partially cultural. "Language and cultural nuances are important in explaining the details of clinical trials, and lack of shared cultural knowledge might be a potential barrier to the participation of an ethnic minority in clinical trials and research studies."
That's why UCSD faculty are recommending researchers revamp the informed consent process to make it more than just getting a signature on a form. "It involves education and information exchange that takes place between the researcher and the potential subject so that the subject is fully aware about what his or her participation entails," said Dr. Barton Palmer, Ph.D, with the UCSD School of Medicine.