Addressing health equity in cancer genomics: A conversation with Loren Saulsberry, PhD
While studies have confirmed that certain racial and ethnic groups are at greater risk for developing cancer and experiencing adverse health outcomes, progress is underway in cancer genomics to help eradicate well-documented disparities.
Loren Saulsberry, PhD, a faculty member within the University of Chicago Medicine Comprehensive Cancer Center and Assistant Professor in health policy and health services research in the Department of Public Health Sciences, recently received a career development (K) award from the National Institutes of Health (NIH) to develop new research programs that prioritize health equity and serve the needs of underrepresented groups in genomic medicine and pharmacogenomics research.
Can you share a bit about who you are, your personal background and how it has shaped your passion for health equity in cancer genomics and pharmacogenomics research?
Saulsberry: I come from a very mixed family background, with people of all shades and levels of education, combined with lots of Southern culture. Growing up in Texas, I was exposed to lots of different languages and cultures.
Despite living in what many people may consider the traditionally segregated South, I grew up experiencing more cultural mixing than some might imagine, so when I started pursuing research — particularly in health policy and health equity — bringing that diverse lens to my work was really important to me. I knew I wanted to focus on topics relevant to translational medicine and care delivery that would improve patient experiences and outcomes despite personal backgrounds. Integrating health equity into areas of rapid technological advancement for treating the chronic conditions that disproportionately affect underserved and underrepresented communities is particularly significant to me.
Currently, there's a major debate in cancer genomics and pharmacogenomics about incorporating race/ethnicity and/or genetic ancestry data into research studies. What are the common arguments you've heard surrounding their use in these fields? Why are some people for or against it?
Saulsberry: It’s essential to acknowledge that there are valid concerns on both sides. Whenever we think about this debate, it’s important to remember that we’re not conducting research involving diverse populations in a vacuum.
This kind of research comes with a lengthy history of discrimination within health systems and egregious policy decisions that have negatively impacted underserved and underrepresented populations. People often cite Tuskegee as the main example, but Tuskegee is not by far the only breach of bioethics.
If we don’t include underrepresented or underserved populations in the science and clinical implementation of genomics research from the beginning, we could potentially be perpetuating inequities and/or exacerbating disparities.So, the reason there is such a debate surrounding this is that everyone is trying to pursue cancer genomics with the most ethical approach. On one side, you have some who believe that considering race/ethnicity or genetic ancestry in cancer genomics is backsliding in a sense. They fear that racial categories, which are completely socialized and political constructs, will be inaccurately tied to biology and that we may do more harm to populations by reinstituting, perhaps in really new pernicious ways, deleterious narratives around differences between racial populations.
On the other side of the argument, population markers based on race/ethnicity and/or genetic ancestry hold enormous potential to tailor cancer care and alleviate health disparities.
Historically, new healthcare technologies are retroactively designed to serve diverse populations. There is a shift in thinking that promotes incorporating considerations of diversity at every phase of the biomedical enterprise so that all groups are poised to maximally benefit from technological breakthroughs all along. If we don’t include underrepresented or underserved populations in the science and clinical implementation of genomics research from the beginning, we could potentially be perpetuating inequities and/or exacerbating disparities.
And where do you stand in this debate and its impact on health equity?
Saulsberry: Both sides of this debate deeply resonate with me. For me, I view my research through both lenses. What stands to be gained? What may be lost? To date, my interpretation of the evidence across the translational cycle from science to society suggests that both race/ ethnicity and genetic ancestry have important roles within genomic medicine. That means we have to be very clear about what we’re researching, the defined populations studied and the implications of the potential results.
We have to ask, “Are we defining our study populations along the lines of race/ethnicity, genetic ancestry, or both?” And once we have an answer, we must be able to clearly justify the selection of those populations according to the research question and the methods selected to answer it. Finally, as a health policy and health disparities researcher, I carefully consider what the policy implications of the research may be and what levers might be pulled to improve health equity.
What are some solutions that can help improve health equity in cancer genomics and pharmacogenomics research?
Saulsberry: For health equity, there is no one solution. It’s going to take collaboration across multiple sectors, and no single researcher, clinician, public health practitioner or policymaker can address health equity alone. It will take all stakeholders within and beyond the health system lending their expertise and alternative perspectives to tackle health disparities.
Collaborative science that clearly articulates its approach and methodology is an important place to start.
How do you envision your research contributing to solutions?
Saulsberry: As a part of the Cancer Center, my focus is on research that can have direct positive impact on patient lives. For example, tailoring genomic studies such that they incorporate the views and preferences of underserved and underrepresented populations. That means taking into account not only individual clinical factors but access, healthcare payment and reimbursement policy for genomic medicine, and the social determinants of health that influence patient interactions with the health system.
Although every study may not address all of these aspects at once, research conducted with a similar focus on equity helps to progress the field and, hopefully, ensure that new barriers aren’t being created along the way.
My current research focuses on health equity and pharmacogenomics, especially tailoring its clinical implementation to underserved and underrepresented patients. I’m excited to be building this research program at a place like UChicago, where there are opportunities to collaborate with the best in the field of translational genomics.
What are some practical approaches researchers can implement from the ground level to make sure they're considering populations who are traditionally underrepresented in clinical studies?
Saulsberry: Whether an intervention is within or outside of a clinical setting, when we think about health equity and what we aspire to achieve, equity doesn’t mean supplying the same exact type or level of resources to all patients, but more so supplying the resources that each individual patient needs based on their particular life situation and clinical factors. I’d encourage researchers to use an interdisciplinary team science approach to make sure this work is not done in a silo. In my experience, taking a team-based approach has illuminated aspects of the research that have ultimately augmented its impact to the real-world setting.