Enriching the inclusion of minority and underrepresented groups in health research

In this invited 'SDG3 and Me’, I talk about my research priorities focusing on human rights and global health and how they contribute to the SDG3.
Published in Sustainability
Enriching the inclusion of minority and underrepresented groups in health research
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Born and raised in Southern Lebanon, I witnessed the impact of wars, turmoil, and discrimination on the physical and mental health of individuals and society. I wanted to understand how stressful environments impact health on a molecular level. The Fulbright scholarship filled that gap and allowed me to come to the U.S. and pursue training in molecular neuroscience. I identified epigenetics mechanisms for transgenerational effects of early nicotine exposure using the nematode C. elegans as a model. I was very passionate about this research as it relates to the sky-rocketing rates of tobacco exposure among children in my home country. My fascination with the environmental determinants of health continued with my postdoctoral research where I showed that mouse mothers with an active lifestyle during the post-partum period shaped the long-term psychophysiology of their offspring. I was struck by the power of the environment to dictate the mental and physical fitness, in a way that is equal to or even stronger than that of genes. I also appreciated the power of data analytics, big data, and real-world data to inform about mental and physical health and gained a strong skillset in data analytics. I began to think about my scientific and data science background and these findings from a human rights and global health perspective. Since then, I have immersed myself in research involving extremely vulnerable populations such as forcibly displaced persons in the  Human Rights Impact Lab, founded by Dr. Gunisha Kaur, at Weill Cornell Medicine. Soon, I will be transitioning to a new role, as the Chief of Research for the Bioinformatics Unit in the Public Health Lab, Department of Health and Mental Hygiene, in New York City. My training and work have contributed to the SDG3, “Ensure healthy lives and promote well-being for all at all ages”, and beyond.

Why are these goals particularly important for me, my organization and their mission?

Medical conditions that are common in vulnerable communities, such as forcibly displaced populations and other minority groups, are not a priority of the world’s total healthcare research funding. How do we expect health equity when these populations are underrepresented or even excluded from health-related research? Sadly, millions of individuals experience conflict and suffer from human rights violations (e.g., domestic violence, human trafficking, discrimination, loss of social structure and support, financial insecurity, family separation, poor housing and neighborhood conditions, food insecurity, barriers to education and healthcare). Stories, surveys, or/and big data are powerful for advocacy and community mobilization. My goal is to transform those individual multi-level profiles to population-level rigorous data. This data will inform public health policies and clinical practice, which can reduce health disparities in our communities.

 

What projects or initiatives I am working on that relate to SDG 3 and how might they help to achieve the SDG 3 goals?

We work very closely with the Weill Cornell Center for Human Rights (WCCHR) to understand the migration stressors that are associated with poor health outcomes among refugees and asylum seekers.

Through collaborations with the Law School at Cornell University, we are working to understand the barriers and facilitators for healthcare engagement in immigrant populations. We are also working to develop standardized tools to collect multi-level health information for migrant children in the US.

I am also very interested in identifying epigenome and microbiome-based biomarkers of susceptibility and resilience to health conditions in immigrant and minority groups.

 

What are the short- and long-term research goals?

The short-term goal is to collect data that allows us to identify multi-level factors that are contributing to health disparities among vulnerable and under-represented populations. The long-term goal is to use this data to make a positive difference in their lives through policy and clinical care approaches.

What I strive for is being involved in community-based research. I believe this is the only way we can maximize diversity and inclusion in health-related research. Why is diversity and inclusion crucial? Because we can’t address health problems if we don’t know their prevalence and identify actionable factors to improve them. All of these endpoints are unique for different communities and groups. Long-lasting partnerships with local grassroots groups, NGOs, and community organizations that represent and serve these communities are instrumental to guide research priorities and spending. Those partnerships are also important to understand the implications of participating in research and the study findings.

As a health scientist, I don’t want to spend all my time in a lab or an office, but I also want to be in those communities, hear their stories, understand their concerns and fears, tailor the research to maximize the benefits, and improve my science communication. Now more than ever, we have a responsibility to prevent and, in the very least, reduce misinformation. One way to do that is to describe the research findings and their implications in layman’s terms. We can follow an exemplary model by the Hastings Center “Genomic Findings on Human Behavior and Social Outcomes: FAQs”. Another fun way we can improve our communication skills as scientists is talk to non-scientists (e.g., joining a local Toastmaster club).

What challenges am I facing in advancing my projects/ensuring success?

I faced resistance from the research community, bioethicists, and lawyers. They shared their fears of unintended ramifications of the research that would further stigmatize vulnerable and disadvantaged populations. This resistance was and is always crucial because it forced me to be very careful and thoughtful. I pursued rigorous training in human subjects research through the Weill Cornell Clinical & Translational Science Center, and established new collaborations, mentorships, and partnerships that ensured our research approach is done with utmost ethical standards. Rather than just shying away from the research because of potential risks, we were determined to power through and improve our approach. This determination is grounded in a deep belief that excluding disadvantaged and vulnerable populations from multidisciplinary and novel research will only exacerbate health disparities. 

Is there something missing from the SDG 3 of the areas I am most interested in?

Something that can be incorporated is improving diversity in health-related research by increasing the participation of minorities and disadvantaged groups. This is important to achieve health and wellbeing for all. Health-related research (e.g., cohort studies, clinical trials) should be accessible to everyone, while upholding the highest ethical standards. If there is anything we can learn from the COVID-19 pandemic, it would be that “no-one is safe until we are all safe.”

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