Asking the Right Questions: Identifying Racial Disparities in Policy and Research

December 16, 2020 | ,  

Asking the Right Questions, by Maria Montchal

Maria Montchal is a 2020 CCST Science & Technology Policy Fellow who was placed in the California State Senate Environmental Quality Committee. Maria received a PhD in Biological Sciences from UC Irvine. From New Jersey, Maria’s dissertation work focused on understanding how the brain allows us to remember when events occurred. She received a BA in Psychology and French from Drew University.

 

During my PhD studies at UC Irvine, I loved talking to people about science. Whether it was with community members at a restaurant or with a rideshare driver on my way to a conference, I found that people are very curious and have plenty of questions about scientific topics, but they don’t often have someone to ask. Through these conversations, the questions I was asking about my own science expanded, growing my perspective and making me a better researcher.  Experiences like these are what drove me to get involved in science policy and pursue the CCST Science & Technology Policy Fellowship.

As a scientist, I use science to try and understand the world. Part of that understanding is the realization that science is not entirely objective or perfect—it requires you to ask the right questions. For my research on how memory works in the brain, I read a lot of peer-reviewed research papers and rather than taking the findings at face value, I asked questions: How was the study designed? Who is affected by it? Has it been replicated? Who funded it? These types of underlying questions are worth posing to the scientific community more broadly.

This broader perspective and line of questioning was essential in my fellowship year, where I was thinking about science not only in the context of singular research topics but for the political, regulatory, and legal implications. During this fellowship year, the overdue spotlight on racial justice in the wake of the killings of Ahmaud Arbery, Breonna Taylor, George Floyd, David McAtee, and Rayshard Brooks, called me to further broaden the underlying questions I was asking around issues of racial justice in science.

 

As a scientist, I use science to try and understand the world. Part of that understanding is the realization that science is not entirely objective or perfect—it requires you to ask the right questions.

 

For example, in my field of neuroscience and medical research, disparities in levels of funding between research programs can disproportionately impact underrepresented populations. One such example has been funding for sickle cell disease.  Often cited as a case study for systemic racism, sickle cell disease primarily affects people of African ancestry, in the US mostly Black Americans.  A recent study compared federal research funding through 2017 for sickle cell disease and another genetic disease, cystic fibrosis, which more predominantly affects white Americans.  The study found funding for sickle cell to be thousands of dollars less per person even though it is three times as prevalent. Scientific commentary has attributed such disparity to structural violence, a term the authors use to “describe how a society, its structures, and its practices systematically harm, even exploit, certain individuals or groups,” including the effects of racism.

The important questioning of the underlying funding of sickle cell disease has called attention to its neglect. In 2019, the National Institutes of Health and the Bill and Melinda Gates Foundation committed $100 million each toward affordable gene-based cures for sickle cell disease and HIV. This investment alongside new gene-editing technologies such as CRISPR/Cas9 provides hope that this long-neglected disease may soon see effective treatment. Early efforts, in a now more competitive landscape, are showing some promise.

 

The progress made in first raising attention then addressing funding to cure sickle cell disease highlights how science has not only neglected important questions but might be utilized to correct these long-standing disparities.

 

The progress made in first raising attention then addressing funding to cure sickle cell disease highlights how science has not only neglected important questions but might be utilized to correct these long-standing disparities.  I have come to understand that the questions I ask enable me to interrogate and challenge such disparities.  The racist history of science and medicine and our country at large, challenges me to continually ask questions in an effort to understand the multitude of effects felt by Black people today. For sickle cell disease, a recent perspective provides a framework for reducing the impact of racism on patients. This example underscores our responsibility as scientists and policymakers to ask the right questions, call out racism when we see it, and fight against it.

 

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About the California Council on Science and Technology

The CCST Science & Technology Policy Fellowship trains scientific thinkers to be policy-savvy, while helping equip California’s policymakers with science-savvy staff. Follow updates from the CCST Science Fellows on Facebook and on Twitter @CCSTFellows. Learn more about CCST Science & Technology Policy Fellowship.

The California Council on Science and Technology is a nonpartisan, nonprofit organization established via the California State Legislature — making California’s policies stronger with science since 1988. We engage leading experts in science and technology to advise State decision makers — ensuring that California policy is strengthened and informed by scientific knowledge, research, and innovation.

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