Clinical trials are essential for medical advancements, but their success hinges on the participation of diverse populations. In the United States, South Asian Americans represent approximately 1.95% of the population. Despite this, they are often underrepresented in clinical research, raising concerns about the applicability of medical findings to this group. Addressing this gap is crucial to developing treatments that are both effective and safe for South Asian Americans.
The Unique Genetic Makeup of the South Asian Community
South Asians have a unique genetic makeup that puts them at a higher risk for certain diseases and affects how their bodies respond to treatments. For example, despite having lower body weight on average, they are more likely to develop Type 2 diabetes and heart disease compared to other ethnic groups.
Genetic inheritance also plays a role in conditions like Thalassemia and sickle cell anemia, making them more common in South Asian communities. Even how the body processes medication can differ—some drugs may be less effective or cause stronger side effects due to genetic variations in metabolism. Yet, despite these crucial differences, South Asians are often left out of clinical trials. This means that new treatments may not be tested for how well they work for this population, increasing the risk of ineffective or even harmful medical interventions. Without proper representation, the healthcare system is essentially taking a one-size-fits-all approach to medicine—one that may not fit South Asians at all.
Why Representation Matters
When it comes to medicine, one size does not fit all—yet clinical trials often treat it that way. Without diverse participation, drugs are developed based on limited genetic profiles, leading to treatments that may not work as well for everyone. For South Asians, this oversight could mean higher risks of side effects or medications that simply don’t work as effectively. A pill that helps one group might not have the same impact on another, and for South Asians, this could translate to poorer health outcomes and avoidable complications.
As medicine moves toward a more personalized approach, representation in clinical trials becomes even more crucial. The future of healthcare isn’t about generic treatments—it’s about tailoring medicine to fit a person’s genetic makeup, lifestyle, and environment. For South Asians, being included in research ensures that doctors can prescribe medications and therapies that actually work for them, rather than relying on a trial-and-error approach.
Beyond better treatments, inclusive research also promotes fairness in healthcare. If South Asians are consistently left out, they remain at a disadvantage, widening existing health disparities. Medical advancements should benefit everyone, not just a select few. More participation in trials also helps build trust in the healthcare system. Many in the South Asian community are hesitant to engage with medical research due to past exclusions or skepticism about its benefits. Seeing their communities represented can change that, encouraging more people to seek medical care and participate in future research.
Simply put, diversity in clinical trials isn’t just about science—it’s about creating a healthcare system that works for everyone.
Barriers to South Asian Participation in Trials
For many South Asians, clinical trials remain a mystery—something they’ve heard of but never considered joining. The lack of awareness about what these trials are, how they work, and why they matter keeps many from participating. Without the right information, clinical trials can seem like risky experiments rather than essential research that leads to life-saving treatments.
Even when awareness isn’t the issue, language and cultural barriers often stand in the way. Many South Asians prefer to communicate in their native languages, yet most trial information is available only in English or other dominant languages. Miscommunication can lead to confusion, hesitation, or outright rejection of participation. Cultural factors also play a role—some may view medical research with suspicion, believing it goes against traditional healing practices or religious beliefs.
Mistrust in the healthcare system is another major obstacle. Like other historically underrepresented groups, South Asians have seen how medical mistreatment and neglect can lead to poor outcomes. Many are hesitant to trust a system that has, in the past, overlooked or misrepresented their needs.
Then there’s the challenge of simply getting to a clinical trial site. Between work commitments, family responsibilities, and financial limitations, taking time off for medical research is a luxury many cannot afford. For those living in remote areas, traveling to research centers is another hurdle. Without solutions that make trials more accessible—such as decentralized trials or financial support for participants—South Asians will continue to be left out of critical medical advancements. Addressing these barriers is key to ensuring fair and effective healthcare for all.
Recommendations for Better Representation
Bringing South Asians into clinical trials isn’t just about inviting them—it’s about meeting them where they are. Community engagement is key, and that means working with trusted figures like religious leaders, local influencers, and cultural organizations to spread awareness. When information comes from familiar voices, it feels less like a corporate pitch and more like a conversation, making people more likely to consider participation.
But awareness alone isn’t enough. Clinical trials need to be designed with cultural competency in mind. South Asians have unique dietary habits, religious practices, and language preferences that should be taken into account. A trial that disregards these factors risks alienating the very people it hopes to include. Offering materials in multiple languages, respecting dietary restrictions, and accommodating cultural sensitivities can go a long way in making participation feel accessible and welcoming.
Logistical barriers are another hurdle, but decentralized trials offer a promising solution. Instead of requiring long travel hours to a research center, remote monitoring, local clinics, and community-based recruitment sites can bring trials closer to South Asian populations. Flexibility in participation—such as evening or weekend options—can also make it easier for working individuals to get involved without disrupting their daily lives.
Finally, governments and regulatory bodies must play their part. Mandating demographic reporting in clinical trials ensures that diversity isn’t just encouraged—it’s enforced. If companies are required to track and publish participation data, they will have a stronger incentive to prioritize inclusivity. At the end of the day, improving South Asian representation in clinical trials isn’t just about fairness—it’s about ensuring that life-saving treatments work for everyone.
Conclusion
The underrepresentation of South Asians in clinical trials is a significant oversight that has wide implications for healthcare equity and medical advancement. Given their unique genetic makeup and distinct health challenges, South Asians must be properly presented in research to ensure that treatments and therapies work effectively for this population.
By adapting inclusive policies, engaging communities, and resolving barriers, the medical community can create a more equitable system that benefits everyone. Inclusive research is not just good science; it is a moral and ethical imperative.