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Diabetes in the Sikh Community: Understanding the Need for Better Representation in Research

Diabetes in the Sikh Community: Understanding the Need for Better Representation in Research
  • March 06, 2025
  • Arshpreet Kaur

In the evolving landscape of healthcare, precision medicine based on genetic, environmental, and lifestyle factors is gaining popularity. However, for many underrepresented communities, including Sikhs, medical research often lacks the necessary focus to address their specific health needs. With diabetes disproportionately affecting Sikh populations [2], the need for tailored healthcare interventions is more urgent than ever. 

Diabetes is a growing crisis among South Asians, and Sikhs are no exception. A study conducted in Amritsar (Punjab), India found that 34.3% of urban Sikhs have metabolic syndrome, a major risk factor for Type 2 diabetes [3]. WHO defines Metabolic Syndrome (MS) as a cluster of risk factors including obesity, dyslipidemia, hypertension, and insulin resistance, leading to cardiovascular diseases and Type 2 diabetes [3]. The prevalence was even higher in women (41.4%) than men (28.2%), highlighting gendered health disparities that often go unnoticed. Meanwhile, research in New York City’s Sikh Asian Indian community confirms that South Asians, including Sikhs, have one of the highest diabetes rates compared to other ethnic groups [2]. A genome-wide association study identified specific genetic loci linked to Type 2 diabetes in Punjabi Sikhs, reinforcing the need for targeted interventions [1]. 

Despite these alarming numbers, Sikh patients remain underrepresented in clinical research. The lack of Sikh participants in large-scale health studies means that the interventions may not properly address their unique genetic predispositions, dietary habits, and cultural challenges.

For many Sikhs, particularly in immigrant communities, language barriers, cultural stigma, and occupational constraints make healthcare access difficult. Many Sikh men may work in physically demanding jobs leading to stationary lifestyles, high stress levels, and poor diet choices—all factors that contribute to diabetes risk [2]. Moreover, many Sikhs may be unaware of their diabetes status because of missed doctors visits or lack of health screenings, leading to late-stage diagnoses and severe complications. Without culturally competent healthcare interventions, these disparities will only widen, leaving many Sikh patients without the preventive care they need.

The good news is that culturally adapted interventions work. The study conducted in New York City tested a community-based health worker program designed specifically for Sikhs and found significant improvements in weight loss, physical activity, and diet among participants. The intervention included six group education sessions in Punjabi, led by trusted community health workers. Participants learned how to incorporate diabetes prevention into their daily routines, traditional cooking, and religious practices. Results showed that those who participated in the full program were more likely to lose weight, increase physical activity, and improve their overall self-efficacy in managing their health [2]. These findings highlight a crucial point: when healthcare interventions reflect cultural realities, they are more effective. 

Unfortunately, the lack of Sikh representation in clinical trials means that most diabetes interventions are not designed with Sikh patients in mind, and their unique perspectives and experiences are often overlooked during the development of study protocols. Standard guidelines often overlook the role of Punjabi food, and specific genetic risk factors that may influence diabetes progression in this community. 

To close this gap, more research must actively recruit and include Sikh participants. Community-driven approaches, such as partnering with community organizations, culturally competent training for healthcare professionals, and developing culturally specific health education materials, can help ensure that Sikh patients receive care that truly meets their needs.

A Call to Action

The evidence is clear: Sikh patients need and deserve more inclusive healthcare solutions. As diabetes rates continue to climb, ignoring this population in research will only worsen health inequities. The success of community-led interventions in New York proves that when healthcare adapts to the people it serves, the impact is profound. 

It’s time for the research industry stakeholders to recognize Sikhs as a distinct and vital demographic in the fight against diabetes. By advocating for culturally inclusive clinical trials and precision medicine, we can ensure that every community—regardless of language, culture, or faith—has a fair chance at a healthier future.

Sikhs in Clinical Research (SICR) is working by engaging with the community and spreading awareness about why research matters. Through educational booths held in Gurdwaras (Sikh worship places) across the US, SICR has introduced thousands of people to the role of clinical trials in advancing medicine. These sessions don’t just provide information, they clear up misconceptions, answer concerns, and help build trust in the research process. 

SICR is working to close the gap by raising awareness, but real change requires pharmaceutical companies to step up. By promoting health and research literacy, incorporating into the study designs the perspectives from the community, and facilitating the access to clinical trials, they can open the door to new therapies, and expand market reach by ensuring interventions are effective for a growing patient population. The future of medicine lies in precision and personalization. If pharmaceutical companies truly want to develop the best possible treatments, they must include the very people who will be using them. 

References:

  1. Kooner JS, Saleheen D, Been LF, et al. Genome-wide association study identifies a novel locus contributing to type 2 diabetes susceptibility in Sikhs of Punjabi origin from India. Diabetes. 2013; 62(5):1746-1755. [https://diabetesjournals.org/diabetes/article-abstract/62/5/1746/42881]
  2. Lim, S., Wyatt, L.C., Chauhan, B., Zanowiak, J., Kavathe, R., et al. (2019). A culturally adapted diabetes prevention intervention in the New York City Sikh Asian Indian community leads to improvements in health behaviors and outcomes. Health Behavior and Policy Review. PMC6894424. Retrieved from [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6894424/]
  3. Singh, et al. (2015). Prevalence of Metabolic Syndrome in Urban Sikhs of Amritsar. Retrieved from [https://www.jpmer.com/doi/pdf/10.5005/jp-journals-10028-1137]