How to ethically conduct research with Black populations at the intersection of COVID-19 and Black lives matter

By Natasha Crooks, Geri Donenberg, Alicia Matthews.

For months now, we have been asking ourselves if it is appropriate to engage populations in research who are disproportionately impacted by COVID-19 and continuously being murdered by institutions (i.e., government, police, hospitals) that are supposed to be protecting them. The current societal context suggests Black lives are disposable, undervalued and unprotected. Black people are constantly being triggered and retraumatized every time they turn on a news outlet or social media platform. From George Floyd, Jacob Blake to Sandra Bland and Breonna Taylor the lives of Black people are viewed as dispensable. The intersection of COVID-19 and the Black Lives Matter (BLM) movement has created an additional layer of complexity that exacerbates racial disparities among Black populations and increases suspicion of research participation.

As tenured and tenure track professors committed to bettering the lives of Black people and reducing health disparities, our goal is to conduct research that drives effective interventions and prevention programs. Yet, in the current climate, we are pondering how to regain Black people’s trust in a system that betrayed them, ensure that we carry out our research with care and sensitivity so as not to retraumatize Black people, and ensure that all scientific innovations reach those who need them the most? As researchers, we must consider the costs of NOT pursuing this research, both on the populations that will suffer and its effect on our careers. Academia is unforgiving when it comes to publish or perish, grants or no grants. Career advancement assumes ethical and sound research practices. Yet, fully understanding the intersection of BLM, COVD-19, and historical trauma of key populations requires institutions and researchers to adjust their norms and expectations and make explicit the strategies we will use to avoid retraumatizing or perpetuating Black lives.

Scientific research is one of the most important ways to improve our national health, but doing so necessitates research participation by all key populations. Unfortunately, working within an institutional system whose structure is inevitably racist – academia – impedes scientific discovery about the most vulnerable groups, particularly during a global pandemic and civil unrest. Understandably so –unethical practices over many years (i.e., Tuskegee, Henrietta Lacks, racist policies and medical practices), combined with persistent health disparities among Black people, discourage the very groups most in need of new innovations, such as the COVID-19 vaccine, from receiving them.

Our article describes how ongoing structural racism and mistrust of the US medical system, particularly in the face of COVID-19 disparities and BLM, continues to traumatize and re-traumatize Black communities and impact willingness to engage in COVID-19 vaccination trials and uptake. We offer three recommendations to ethically conduct research with Black populations at the intersection of COVID-19 and BLM: (1) Understand the ongoing impact of trauma, (2) acknowledge the historical context of mistrust as reasonable and appropriate, and (3) engage in open and honest conversations with Black people to better address their needs. At the core of our recommendation is recognizing the impact of trauma in our research, care and practices.

Today’s context demands that we serve and protect Black populations. This manuscript was written in hopes of encouraging health care professionals to conduct research with Black populations using new standards that underscore respect and sensitivity.

Paper title:  The Ethics of Research at the Intersection of COVID-19 and Black Lives Matter: A Call to Action

Authors: Natasha Crooks, Geri Donenberg, Alicia Matthews

Affiliations: University of Illinois Chicago, College of Nursing and Medicine.

Competing interests: N/A

Social media accounts of post authors: Natasha Crooks LinkedIn account.

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