In addition to celebrating and uplifting often under-recognized contributions of Black scientists and individuals to research, SIG wishes to acknowledge problematic issues in research, both historic and contemporary.
As noted in Part 1, staff at the Social Intervention Group (SIG) are commemorating Black History Month and the tremendous achievements of Black researchers, scientists, and health care workers both historically and contemporarily (“making history”) related to SIG’s research areas.
SIG shared these contributions through three separate articles to commemorate Black History Month:
- Historic contributions
- Contemporary contributions
- Problematic issues in research.
Addressing problematic issues in research
This section includes contributions from Dr. Dawn Goddard-Eckrich, associate director of SIG, Dr. Elwin Wu, co-director of SIG, Melissa Cervantes, student researcher, and Deidra Brooks, student researcher.
In addition to celebrating and uplifting often under-recognized contributions of Black scientists and individuals to research, SIG wishes to acknowledge problematic issues in research, both historic and contemporary.
Humans, as subjects
First, the important contribution of Black individuals to research (as subjects) is often invisible (to others) and unacknowledged. Researchers have made careers studying Black individuals. This contribution has historically been without consent (see the oft mentioned Tuskeegee Experiment and the aforementioned Henrietta Lacks) or recognition, despite the individuals’ contributions to scientific advancements, also known as medical apartheid.
Dr. Goddard-Eckrich shares that Black women are often invisible and much has happened in the past 20 years that impacts how Black individuals respond to research, particularly in light of COVID-19. “The IRB trainings need to be updated (beyond Tuskegee) to include contemporary experiences of women of color, since non-consensual procedures still occur such as the forced sterilization of women who immigrated to the US, and Black women are often ignored or their pain is denied.”
Dr. Wu adds that advances in HIV were built on the lives and deaths of gay men, and Black men who have sex with men continue to carry the highest burden of HIV.
Health equity tourists and the need for community-based participatory research
Deidra Brooks shares that “To bring what happened in the past into the contemporary context, we could recognize that research is shifting to community-based participatory research (CBPR) or mixed methods to share power with research participants and do less harm.”
Ms. Brooks also advises that “more culturally adapted interventions are needed to reverse the disparity…more specifically, interventions are needed to train practitioners to practice in an anti-racist, trauma-conscious way. Researchers' discomfort with calling out discrimination and structural racism leads to missed opportunities to eradicate racial disparities. Some discriminatory practices are so embedded in the culture, we rarely recognize them and, therefore, perpetuate stigma and harm.”
Building on the impact on human “subjects,” Dr. Wu shared the advent of “health equity tourists” – white researchers funded to “study” Black individuals at the expense of Black researchers. This makes it imperative to examine ways to instead promote and fund Black researchers from the communities being studied. Dr. Goddard-Eckrich shares that If a researcher is being funded to study a demographic, there should be annual training at the very least they must do as part of this funding.
Training that focuses on culturally-informed research and includes principles from Community-Based Participatory Research is available. Dr. Goddard-Eckrich recommends The Cornell Center for Cultural Humility.
Further, Dr. Goddard-Eckrich continued, “grant processes need to be restructured to better give opportunities to non-traditional academic trajectories necessitated by the inability to complete a post-doc for financial and other reasons.”
For more on health equity tourism, see this NPR episode White scholars can complicate research into health disparities and this article from STAT ‘Health equity tourists’: How white scholars are colonizing research on health disparities.
There is a lot of focus on the D & I (diversity and inclusion), but we must never forget the E (equity)! We must leverage our work to shift power, language, epistemology, access, practice, and policy to produce equitable and restorative outcomes, no matter how uncomfortable or challenging that work may be.
Racial equity and substance use research
It’s important to also acknowledge the need for Black individuals in studies related to the ongoing overdose incidents. Even the term “opioids,” Melissa Cervantes shared, can be a misleading term as it can “discourage people of color to get help because it’s associated with white people…there has been an overwhelming number of overdoses among non-white communities.”
To this end, the HEALing Communities Study recently published the following paper, examining the need for racial equity to be part of substance use research: Placing Racial Equity at the Center of Substance Use Research: Lessons From the HEALing Communities Study.
Moving forward with equity
In order to move forward, all of the above must be addressed. In addition, Ms. Brooks points out: “There is a lot of focus on the D & I (diversity and inclusion), but we must never forget the E (equity)! We must leverage our work to shift power, language, epistemology, access, practice, and policy to produce equitable and restorative outcomes, no matter how uncomfortable or challenging that work may be.”
She continues, “We can't wait until the end of the study to start talking about equity or leave the work to future researchers to bring equity into their research. Publishing studies with recommendations or limitations around equity, without having made a concerted effort to engage in inclusive and equitable research, is not ethical or efficient. We should also return to the literature to begin to implement the recommendations of the past and start each study with a discussion about equity.”
Read Part I: Historic Contributions
Read Part II: Making History
About SIG
SIG was founded 30 years ago to address the AIDS pandemic. Both AIDS and HIV continue to be the focus of most of SIG’s research projects and efforts, which also include often concurrent issues of intimate partner and gender-based violence, substance use disorder, and racial and health disparities. The underrepresented populations SIG serves include people who inject drugs or suffer from substance misuse, sexual and gender minorities, justice-involved populations, people who are refugees or undergoing forced migration, and people who trade sex for money.