The Knowledge Gaps in Medical Research

The Knowledge Gaps in Medical Research

There is a great deal of historical and modern data to reflect the gender and race knowledge gap in medical research. The term gap is used to define missing information as well as false information. These gaps have been proven to have stemmed from stereotypical beliefs, bias, mistrust of the medical field and its practitioners by those who do not identify as men or White, and historical instances of medical violence and abuse of power by researchers and practitioners.  There are also many challenges faced by women, femmes, transgender, and nonbinary people as well as Black, Indigenous, People of Color in medical research and education. Diversity, Equity, and Inclusion don’t just pertain to the workplace. Barriers to progress and knowledge can also impact our personal lives and even our health. 

Barring a credible reason for their exclusion, federal guidelines have mandated the inclusion of women in medical research studies.  Given this, it is important to diversify the pool of women to include various races and ethnicities which carry implications like racial stress and socioeconomic effects that cannot be ignored.  As the nation continues to discuss the topic, it is widely understood that the concept of race can be a difficult one to grasp because there isn’t one standard definition by which all people and professions abide.  Race is defined biologically as groups who share some hereditary physical characteristics; and defined sociohistorically by unstable social meanings constantly being transformed by debate.  Within the medical field, there is a divide in the interpretation of race; and the question of whether race should be considered a biological construct or a sociological one.  On the biological construct side of the argument, race is seen as fixed and genetically determined.  On this side as well, to researchers and practitioners, race can be identified solely by skin color and other factors that can lead to assumptions, missed opportunities or miscommunication. With the sociological side of the argument, race is seen as a social and political entity with no biological bearing.   It is regarded as unfixed, and rather a societally crafted construct to establish and maintain systems of.  Even with this ideology, traditional medicine includes the rejection of sociohistorical notions of race.  This ideology teaches that while race-based health disparities exist, there is little to be done about them since they are solely biological. That coupled with the learned biases that Americans and those in America pick up throughout life, BIPOC people often do not receive the best care, particularly compared to their White counterparts.  Medical professionals and medical researchers can hold views “that lead them to make unintentional, and ultimately harmful, judgements about people of color.” In fact, when physicians are given the racial Implicit Association Test, which measures attitudes and beliefs that people may be unwilling or unable to report, they typically associate White faces with pleasant words more easily than Black faces with pleasant words.  

The presence of more diversity can help to alleviate some of the barriers to communication between different groups. The barriers to intercultural communication, both verbal and nonverbal, as developed by LaRay M. Barna include anxiety, assuming similarity instead of difference, ethnocentrism, stereotypes and prejudice.  Barna describes anxiety as the feeling of not being totally present for a communication transaction and/or not knowing what is expected of you.   This idea can be adapted to include the practices of not listening to information given or not giving proper attention to other important factors within a study or subject; racial stress, gender, or socioeconomic factors for example.  All these factors can have a direct impact on the publication of textbooks, studies, and research; rhetoric used in medical education.  Sociologist, Eduardo Bonilla-Silva discusses the phenomenon that stems from discomfort and lack of experience with different groups that he has labeled rhetorical incoherence. Lacking the ability to comfortably and prudently communicate with or about people from different identity groups puts researchers and practitioners at a disadvantage.  The same can be said about the assumption of similarity instead of difference.  This practice can lead to unawareness of important differences.   For example, Black people are more likely than White people to die from high blood pressure, diabetes or stroke.  In addition, women make up nearly 80% of the millions of Americans who have osteoporosis due to having thinner bones and less bone tissue than men.   Researchers must be able to identify these facts, the reasons for them as well as ways to combat them.

Stereotypes and prejudice make up another barrier to intercultural communication.  In the case of medical research, a predominant stereotype includes the perceived pain tolerance among individuals of different races.  A 1981 study compared Irish, Italian, African American and “Protestant Anglo-Saxon” women who recently gave birth.  Despite results that did not convey significant differences in pain tolerance and similar findings from other studies “there remains a prevalent clinical assumption that ethnicity modifies pain.”  Although this article was published in 1996, the perpetual belief in this stereotype reinforces this false premise and has had and continues to have detrimental effects on Women of Color.

In fact, history has shown that poor and minority women and people have been violently exploited by those in the science and medical field, leading to generations of distrust.  Notably, the Tuskegee Syphilis Study in the early 1900s is citied by BIPOC people as a main reason for this distrust.  This study took place in Macon County, Alabama with the intent to record the natural history of syphilis in Black men. At that time of the study’s beginning, there was no proven treatment or cure for the disease.  When penicillin became the standard treatment for syphilis, treatment was withheld to prevent the disruption of the research. Moreover, the participants were told that they were going to be treated for “bad blood;” a term used to explain the causes of anemia, fatigue, and syphilis. As a result of this experiment, dozens of Black men died leaving their spouses, children and others infected as well.  The United States has also seen several instances of forced sterilization of poor and/or BIPOC women.  This year, news was shared of the coerced sterilization of detained women by the US Immigration and Customs Enforcement agency.  The American Civil Liberties Union reports that the Nazi Party of Germany borrowed ideas for their sterilization regimen from eugenic sterilization laws adopted in the US in the early 20th century. Furthermore, given talks of COVID-19 vaccine development, several news sources have published articles discussing Black America’s mistrust of new vaccinations.

Gaps and bias in medical research begin early. I also propose audits of existing published research and medical textbooks to target and update any incomplete or one-sided data points.  One of the most impactful instances of bias in textbooks occurs when we reach adolescence and are taught about reproduction by way of the Fertilization Fairytale. Eggs, found in women and people with uteri, are seemed feminine and as a result are considered passive creatures who lazily await the more active, masculine sperm as it expertly navigates its way through the partner’s reproductive anatomy. Missing and inaccurate information permeates medical research historically and contemporarily.  Identifying it as well as the causes are integral to the process of closing these information gaps. 

Mitigating these issues involves attacking the problem at the root and the result. The root alludes to the source, which in this case is the bias, beliefs, and cultural understanding of medical researchers.  Research is conducted from one perspective and distributed widely to be interpreted by countless others.  Result is being used as a reference to the diversity of sample groups used in medical research.  The key is targeting those two points with bias testing and training, cultural competency training and requirements for creating more diverse test groups in research studies. While it can’t measure racism, sexism, homophobia or transphobia, the tests determine whether you have an automatic preference towards a certain group.  Cultural Competency Training should include topics on gender and racial disparities in certain illnesses; cultural customs and nutrition; history of medical violence against marginalized groups; nonverbal communication and more.  The goal is to encourage outside perspectives within researchers and practitioners. 

Aiming at the root begins with education. Several medical school programs at Johns Hopkins and Stanford University, are introducing unconscious bias training into their curriculum.   The goal is to prevent the perpetuation of stereotypes or false beliefs of underrepresented groups that may include a certain racial group’s ability to tolerate pain or the way symptoms present in different genders.  It is also aimed to have professionals understand the psychological and sociohistorical perspectives that result from membership in marginalized groups.

Essentially, if you know better, you do better.