The Tuskegee Syphilis study was public health researcher that both purposefully and unethically denied treatment to Black men diagnosed with syphilis to observe the progression of the disease. (National Archives)
There is a plethora of research being conducted in communities of color this year due to the outbreak of COVID-19 as well as it being an election year. It is crucial to consider ethics when working with and conducting research in communities of color. There are a few reasons that’s the case.
I’m sure many of you have heard of the Tuskegee Syphilis study in which public health researchers both purposefully and unethically denied treatment to Black men diagnosed with syphilis to observe the progression of the disease. This study led to a deep mistrust of public health officials and research participation in the Black community.
The Tuskegee study is the most referenced unethical research study, but it’s just the beginning (or middle?). When you take a further look at unethical research performed using Black men and women as research subjects, the history is appalling. From Henrietta Lacks to the many gynecological surgeries performed on enslaved Black women without anesthesia by Dr. J Marion Sims, Black people have been mistreated for centuries in research.
Due to the deep mistrust of research and the generational trauma experienced by people of color, it is especially important to design ethical research studies that do not serve to add to the trauma experienced by these communities. (In fact, there is an extraordinary mandate on those of us who come from these communities to hold an awareness of the vestiges of this maltreatment and trauma at the fore when embarking on research missions.)
So how do you design a study and recruit participants in an ethical manner?
Learn. Get to know the community, population and region your study will involve. Every community is unique and has its own history. Conduct background research on the community you are hoping to survey and get to know members of the community. What does the community value? What do members of the community think about their own community? This serves to build trust.
Question. After getting to know the community you are studying, you can begin to develop questions. It’s good practice to keep community values in mind when developing research questions, as it allows the community’s voice to inform the research.When developing questions, it is important to remove as many biases as humanly possible, respect the culture of the community and create questions that serve to advance equity while reducing harm. Likewise, ensure your questions are written on a level your target population will understand. If you are conducting a study with Black girls in grades K-3, you wouldn’t use the same language as you would in a study involving Black women in college. It is also a good idea to have someone from the community in which you are conducting research to review your questions before you conduct your study to ensure your questions don’t harm the community in any way.
Recruit. Once you have your questions, it’s time to recruit participants. Participant recruitment should include the help of community members. It’s good practice to contact local organizations that community members know and trust to help recruit participants for your study. Another good practice during participant recruitment is to study the preferred terms in the community. For example, our research team found in a recent study on voter engagement and participation with the ACLU that Spanish speaking participants prefer the use of terms such as “Latino” and “Latina” instead of “Latinx.” Therefore, if your recruitment text is in Spanish, it would be wise to use “Latino/ Latina” because “Latinx” is not widely accepted in the Spanish speaking community. This research might take some additional steps and time, but it will be worth it in the end and will help you better connect with community members.
Report. Finally, and most importantly, it is important for you to report your findings back to the community you are researching.
Conducting research should involve the community you are studying at every level of the research. Your job as a researcher is to find out who is a part of the community, what is going on in the community, when did this occur, how long has this been occurring, why this is happening and what can be done to help bring equity to the community?
At the end of the day, our goal at The Lighthouse | Black Girl Projects is to be and bring love and light to Black communities across the Southeast. We want to create spaces of safety and solidarity for Black girls and women. To do this, it is imperative our research studies are ethical and do not cause harm to the people and communities we so deeply care about.
For more information on ethical research, please read “How to Embed a Racial and Ethnic Equity Perspective in Research: Practical Guide for the Research Process.”