America is dying: The case for intersectional healthcare research

The ethics of healthcare research is a topic of contention. As a country, we have been unable to define who deserves the inalienable rights of life, liberty and the pursuit of happiness — is it white men, women, the elderly, maybe children? The answer should be “all of the above,” but it takes one look at current healthcare research protocols to know that is simply not the case.

In order to make healthcare accessible and equitable for everyone, there needs to be research on disease pathology, medications, and treatments. Research informs how we can move forward. If large and relevant populations are systematically excluded from study design, how can we make progress? The LGBTQ population is a severely stigmatized group that faces a disproportionately high risk for depression, suicide and substance abuse. But still, there is a glaring lack of data on this population, particularly the transgender community. Not only does this discrepancy limit providers’ ability to offer optimal, value-based care, it also poses potential harm to the entirety of the American population. Better research that incorporates the LGBTQ community could translate to reductions in disease transmission, increases in mental well-being and lower healthcare expenditures.

Women are also subject to research exclusion and are considered a minority population. This reality is disconcerting because women account for over half of the U.S. population. In healthcare, the exclusion of women can be attributed to concerns about hormones, fertility, pregnancy, and etc. Female research is necessary and has important implications on health. Take, for example, the research conducted by the Women’s Health Initiative (WHI) that revealed the increased risk of breast cancer due to hormone therapy. Without this research, the correlation between this widely accepted medical practice and breast cancer would not have been uncovered. Eventually, the findings from the WHI prompted a change in practice. This is a clear example of how research regarding women as a bloc is significant even though it is insufficiently conducted.

Over the years, however, participation rates for women have generally improved. Unfortunately, this is not the case for pregnant women, women of color and women with disabilities who are further marginalized in the world of science. A recent study from 2018 reveals flaws in breast cancer screening standards. For white patients, breast cancer reaches its most aggressive stage in their 60s. For non-white patients, breast cancer advances much sooner, with the most aggressive stage affecting people in their 40s. If non-white patients are screened when they are 50 years old, the disease will not be diagnosed in time, potentially causing higher morbidity and mortality among that population. The screening guidelines for breast cancer were created based on the research done on white women and generalizing those findings to the entire population. Conducting intersectional research is hard, but we cannot offer the care that vulnerable populations desperately need if we don’t invest time into equitable research guidelines. While there are some promising signs, we have to keep pushing because the health of our nation depends on it.