Asian Americans represent five percent of the United States population—a total of 22.9 million individuals. For decades, this population has been significantly underrepresented in clinical research due to a variety of missing factors, including trust, willingness to participate, and culturally competent communication.
Why are Asian American Participation Rates So Low?
Sponsors and researchers must remember that Asian Americans are not a monolith—they are a diverse group, including people from more than 20 countries. The US Census Bureau defines Asian Americans as people originating from Eastern or Southern Asia or the Indian Subcontinent, and includes people who identify as Cambodian, Japanese, Malaysian, Pakistani, Thai, and Vietnamese, among many others. Native Hawaiians and Pacific Islanders are distinct from the Asian American population, and include people who originate from Hawaii, Guam, Samoa, Fiji, or other island nations of the Pacific.
According to one study, Asian Americans have the lowest research participation rates compared with other racial and ethnic groups across the United States. Asian Americans are also underrepresented in cardiovascular disease research, mental health research, women’s health research, and community-engaged research. As with other minority groups, these data are concerning because of the problems that arise when clinical research participants don’t match the makeup of the general population. It’s well known that genetics, weight, race, gender, and sociodemographic factors all play a part in treatment efficacy.
For Asian Americans, the model minority myth also plays a role in this research inequity. As the so-called “model minority,” Asian Americans are assumed to have higher socioeconomic status, higher levels of education, and lower mortality rates than non-Hispanic Caucasians. Generally, they are also thought to have a similar health profile as Caucasian Americans, resulting in reduced screening for certain high-risk conditions. The data supports this, showing that cancer is the leading cause of death in Asian Americans, while heart disease is the leading cause of death in some Asian American subgroups, including those with Indian, Filipino, or Japanese heritage.
Barriers to Participation
One main barrier to participation is mistrust of the medical establishment and medical research, found to be high across all ethnic groups. Native Hawaiians, in particular, did not trust that researchers’ agendas would benefit their community. Asian Americans also reported concerns that they would be treated like lab rats or guinea pigs—similar to concerns identified in a 2005 study
where Asian Americans were more likely to call clinical research “experiments.”
Competing demands, like family or work, unintended consequences, and a lack of information about research opportunities—engendered by a lack of bilingual research staff and informational materials—are also barriers, as is the stigma associated with participation in trials for conditions like cancer and HIV. Researchers found that Asian Americans of Filipino descent had significant concerns about how research participation could affect immigration status.
Asian Americans were also less willing and likely to participate in any of the types of research in question, including studies where:
- Participants were asked questions about health
- Researchers wanted to view medical records
- Blood samples were required
- Genetic samples were required
- Medication was required
- Overnight hospital or clinic stays were required
- Medical equipment use was required
- Participants didn’t get paid
How Can We Increase Participation?
Some Asian Americans are willing to participate in clinical research—especially research programs that are culturally congruent or culturally competent, provide a monetary incentive or free health exam, or have a low associated or perceived risk.
Sponsors and researchers can prioritize culturally competent care to increase participation. Cultural congruence requires cultural awareness and assessment on the part of the team behind the trial. But increased participation would create a return on investment through gathering even more diverse, high-quality data.
Even within the Asian American population, not all barriers and facilitators for research participation are the same. South Asians report disinterest in research, a lack of feeling or belonging in their communities, and fear and inhibition as some key barriers to participation. Chinese Americans cited the perceived risks of clinical research and a lack of available communication in their preferred language as primary reasons for not participating.
One commonality, regardless of potential participants' ethnicity, is the desire for bilingual communication across the clinical research process. From recruitment to participation to conclusion, bilingual Asian Americans would like the opportunity to communicate in their native language if they so choose. Providing this simple accommodation could greatly expand the pool of potential participants and is a relatively simple arrangement to make.
The creation of diverse clinical research participant pools will benefit everyone. However, diversity in clinical research is particularly beneficial to diverse participants themselves, groups that often include racial and ethnic minorities who are overlooked within the US healthcare system. Creating a paradigm of cultural competency and congruence will improve research outcomes, trust among minority populations, and, ultimately, the caliber of data available to improve healthcare outcomes.
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