By Bo James Hwang | February 19, 2019
Post-Baccalaureate Pre-Medical Student, UCLA Extension
The All of Us Research Program, a project of the National Institutes of Health, aims to gather health data from one million people living in the United States. I was chosen to participate in one of the University of California, San Francisco’s research feedback sessions for the initiative.
Many of the trans and non-binary people participating in the feedback session discussed their personal experiences with medical providers and researchers. Many brought up the mistrust that trans people have for researchers. If we want this type of research to be accurate, we must take an honest, if difficult, look at how communities feel about the research projects they have experienced. I believe we can do better research when we understand those experiences and feelings.
Although researchers may have the best intentions at heart, many trans people of color who are working-class or living in poverty feel they cannot trust researchers. Why? I believe one of the main reasons is the way many research projects have been funded, designed and conducted.
For example, researchers usually are not encouraged, incentivized or required to do a report back to the community members about their findings. We have seen researchers come into a community, gather their data, and leave. They do not return until their next research grant, and many people may feel used in this process.
It is true that some research methods are designed in ways that allow community members to have access to resources—classes, technology, medical appointments, and social services support. But once the study is done, those resources also leave.
Some researchers have used their power in ways that have abused people of color and those of low socioeconomic status (see this recent post by Antwan Matthews for some examples). I wanted to learn more about what it really means to de-colonize research, so I did some searching. I found Sabelo Ndlovu-Gatsheni’s post, "Decolonising research methodology must include undoing its dirty history."
Ndlovu-Gatsheni mentions the importance of researchers re-examining the way they see those being researched. Often times, these participants are seen as “specimens” and objects of study. Instead, researchers must see them as subjects of study—beings defined by their rationality.
We have too many examples of researchers who are not held accountable for their actions. This is why I believe it is essential to have community hearings and report backs in research studies. When researchers build true relationships with community members, and get honest feedback from them, historical negative power dynamics can be shifted to something more constructive and positive.
Ndlovu-Gatsheni encourages us to rebel against colonizing methodology—to “re-position those who have been objects of research into questioners, critics, theorists, knowers, and communicators.”
I myself have participated as a subject in numerous research studies. I would get gift cards to restaurants and stores. But when I disclosed some of the difficulties I was facing with housing insecurities or trauma, I was rarely connected with resources that could help.
It is important that researchers work closely with community members, social services, and providers who understand the needs of the community. This is the best way to avoid retraumatizing people of color and others who have experienced discrimination and inequity. Participants facing challenges or difficulties should be connected with appropriate resources.
Today, I am also someone who is participating as a researcher looking at health and equity issues facing the trans community. I think it is important for researchers and medical professionals to build a relationship with the trans community.
Here are some things researchers can do: Meet us where we are. Come out to the trans town hall meetings, protests, and rallies. Show us that you care. Ask us what we need.
I am hopeful that when researchers do these things, public health research will improve. I envision a future where researchers and people from the community can have an honest and truthful relationship. It begins with re-structuring funding and research protocols. It continues when researchers re-examine their power and privilege and listen to their subjects. With this kind of shift, it will be much easier for community members to understand some of the limitations researchers face.
Bo James Hwang is a post-baccalaureate student at UCLA Extension. He graduated from University of California, Los Angeles, with a bachelor’s degree in Gender Studies and Asian American Studies. He was one of the 2018 Summer HIV/AIDS Research Program (SHARP) scholars through the San Francisco Department of Public Health and participated in ETR’s 2018 Be The Change Transgender Leadership Institute.