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GRAD 219 Course – The Black Experience in American Medicine – Week 2

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This is a guest post by Rhea Misra, PhD Candidate, UCSF Biomedical Sciences (BMS) Program

In reading “The Black Politics of Eugenics,” I learned about how eugenics was not initially a negative concept. Eugenics relates to the idea of human improvement through reproduction and understanding hereditary. It has been associated with Nazi doctrine; however, Nuriddin brings up in the article that, at one point, eugenics was embraced by marginalized communities to combat scientific racism and improve racial equality. The idea that marginalized communities would embrace eugenics to combat scientific racism, reminds me how slurs and negative concepts are reclaimed by these same communities that are harmed by such things to bring about improvement or change. This article also made me reflect on if eugenics, in the modern times, could ever have a positive association? I am not sure I have an answer to that. On one hand and thinking about the research I conduct, genomic editing tools such as using CRISPR or AAVs to make changes to genome have become commonplace.  Because of the inherent nature of these genetic tools, do they fall under the category of eugenics? They have been used to treat diseases. In a previous course, I had met a patient who had undergone gene therapy to treat his hemophilia, and now no longer requires blood transfusions. But on the other hand, gene editing tools have been used in some cases to make cosmetic edits. The whole idea of human improvement in eugenics comes with deeming certain traits better than the other; thus, marginalizing certain groups of people. Because of the inherent “othering” that comes with eugenics, I can understand how it quickly turned into a negative concept utilized to uphold a racist system rather than breaking it down.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Jackie Roger, Ph.D. Candidate, UCSF Program in Bioinformatics (BI)

During our class on 5/21, we learned about the term “biopolitics”. After our discussion in class, I wanted to learn more about it and ended up doing some additional reading. Biopolitics, conceptualized by Michel Foucault, is the intersection of life and politics. In practice, it is the governance and control of human life. Many of the topics that we have covered in class can be contextualized within biopolitics.

On 5/17 we talked about forced sterilizations in California prisons. This was a mechanism for controlling who could and could not procreate, and was deeply rooted in white supremacist ideologies. On 5/24 we discussed the hysteria in the 1980s about the “crack baby epidemic” that never ended up happening and had no reasonable scientific basis. There was widespread panic about the possibility of babies born with physical and cognitive disabilities, but little concern about the lack of resources and support for women with substance use disorders. In both of these examples, the focus was on the child-bearing potential of women, and not on the personhood of women. Both forced sterilizations and public hysteria were used to police who should be having children.

On 5/19 we reviewed the Tuskegee syphilis study, and on 5/26 we drew parallels between the racial disparities of the HIV/AIDS epidemic in the 1980s and the ongoing COVID pandemic. In all three of these examples, the medical system prioritized white lives over black lives. There was significant investment in caring for white patients, while black patients were often neglected or mistreated.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by LauraAnn Schmidberger, Ph.D. Candidate, UCSF Tetrad Graduate Program

Doctors and other scientists are trained to be precise in how they word their hypotheses, methods, and findings, because they know that precision is important in the fields of medicine and science. However, this accuracy does not seem to follow them as they cross into the social sciences. The article “On Racism: A New Standard For Publishing On Racial Health Inequities” highlights some examples of the careless ways scientists discuss race in their studies.

Scientists often say that “societal factors” may contribute to the health disparities they see in Black communities, but they fail to ask what causes those social disparities—that is, racism. This is like attempting to treat a cancer patient’s pain, fatigue, weight loss, and other symptoms instead of acknowledging that they have cancer and attempting to remedy that root cause.

Similarly, we need to examine and begin to treat the root cause of health disparities. Perhaps Black communities do face more financial stress or lack easy access to healthcare, but these are symptoms of the larger issue of pervasive systemic racism. The article points out that there is an abundance of scholarship (largely by Black authors) on the topic of “how racism shapes conditions germane to racial health inequities.” It is not that scientists don’t have access to this information, but that they choose to ignore it or gloss over it for less accurate and less meaningful conclusions.

I also appreciated the distinction the article offers between different types of racism: “interpersonal, institutionalized, or internalized.” While all racism is structural, it can express itself in different ways that all need to be addressed; we can think of these like different types of cancer which require different treatments. Many cancer patients may benefit from chemotherapy, but knowing where the tumor is might allow it to be removed surgically. Knowing the origin of the racism and how it is perpetuated in a given scenario can give us better tools to eradicate it. For example, interpersonal racism may be combated with education on critical race theory, while institutional racism might require breaking down the old systems built on inequalities (i.e. abolition rather than reform).  

Another example of imprecise language arises from the issue of trust. One of the “social disparities” clinicians often point to is the lack of trust that Black individuals and communities feel for the medical community. However, as the article notes, “assertions that patient mistrust drives disparities obscures the etiologies of racial health inequities and tacitly blames affected patients for their disproportionate suffering.” In other words, saying that Black patients suffer from diseases either more frequently or more severely because they don’t trust doctors to help them is a form of victim-blaming. It is not the Black community that has decided not to trust doctors; it is the medical community that has, through both assaults on and apathy towards Black individuals, actively dismantled any good relationship the two groups might have had.

Issues of mistrust have arisen not because of the one event alone (such as the Tuskegee experiments), but because of both historic and ongoing micro- and macro- aggressions against marginalized groups, and these can only be addressed by addressing their root cause: racism. Largely white medical institutions continue to prove themselves undeserving of the trust of BIPOC communities because they continue to perpetuate racism in a multitude of ways, from continuing to utilize race corrections and other concepts that reify biological theories of race, to repeatedly marginalizing and otherwise failing Black faculty and students. While trust between patient and doctor (as well as patient community and healthcare community) is an important factor to consider, “incessant racial health inequities… reveal less about what patients have failed to feel and more about what systems have failed to do.”

Medicine loves precision. A person does not just have lung cancer, they have non-small cell lung squamous-cell carcinoma, or perhaps pulmonary enteric adenocarcinoma. However, when it comes to understanding the disparities between patients of different races, the desire for exactness seems to disappear and is replaced with hesitant generalizations. This is not unique to science, but appears in many corners of society, especially as discussions of race become more common. However, scientists have the ability to give the topic the accuracy it deserves by becoming familiar with the growing wealth of scholarship on the relationship between racism and health disparities and citing it in our own research. Language matters, and taking more care in our wording as it relates to race and medicine is one simple step to combating racism in the field.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Karissa Hansen, Ph.D. Candidate, UCSF Developmental and Stem Cell Biology (DSCB) Program

The readings and conversations in class this week brought forward discussions about how institutions can ensure equitable access and treatment of underrepresented persons in the biomedical professions. The struggles of individuals at each step of this process were highlighted: From early in training during medical school and residency to higher positions of authority at medical institutions. Therefore, extensive changes are not only required at the level of admissions, but also in later career support in hospitals across the country. Despite the conversations that have been reignited in the past year regarding equitable practices, meaningful large-scale change has yet to be seen. Bias in hiring practices accompanied by limited support in part has led to the lack of representation in leadership positions and a reinforcement of such inequities. Moreover, persons of color are often those that are called upon, or volunteer, to expand these efforts at institutions across the country, increasing the burden on these individuals. I feel like I must hold out hope that the education of the current generation of up-and-coming physicians and scientists will lead to such changes as these individuals move into positions of power. It’s hard to be optimistic with such a long road ahead, but the young scientists that I am surrounded by give me hope that we’ll get there.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Nebat Ali, PhD Candidate, UCSF Biomedical Sciences (BMS) Program

One of the final pieces we read as part of this course was an article by Boyd et al titled “On Racism: A New Standard For Publishing On Racial Health Inequities”. This article encompasses many of the concepts we discussed in class and exemplifies how racism continues to be maintained in our medical and scientific spaces. As the article states, racism is “America’s earliest tradition” and was used as the foundation for all aspects of American society.

As someone who grew up in the Bay Area, there seems to be the misconception that liberal parts of our country are somehow free of these frameworks. This is far from being true, and one can quickly come to this realization by taking a brief look into the history of our institutions.

Fifty years ago, Black employees at UCSF initiated the formation of the Black Caucus- the first affinity-based group established in the UC-system- in order to protest the racist policies and mistreatment they faced at UCSF. Members of the Black Caucus coined The Medical Center at Parnassus “The Plantation on the Hill” due to the discriminatory practices they faced in the workplace (reference linked below). As a united voice the Black Caucus demanded for the improvement of their working conditions and for their fair treatment. In addition, they also fought strongly to advocate for the recruitment and retention of Black students at UCSF. When I casually walk through the halls of my building or sit and have lunch in the cafeteria, I’m often reminded that only fifty years ago Black and Brown UCSF employees didn’t have the right to freely navigate through campus the way that I do. The strikes and protests organized by the Black Caucus were transformative, and while their impacts are still felt today there is still a long road ahead in order to dismantle the systems of oppression these institutions were built on. Within our own communities in San Francisco, we are witnessing and experiencing some of the most alarming disparities in the ongoing COVID-19 pandemic.  

I have a vivid memory of a discussion that took place in a microbiology course I was taking early in the pandemic that revolved around genetic predispositions to severe COVID-19 infections. It was even more troubling to see subsequent studies that additionally failed to assert the contributions of racism in the prevention, detection, and treatment of COVID-19 infection. As we discussed through some of our previous readings, studies like these result in both the erasure of systemic racism’s impact on health as well as the large numbers of Black scholars who specialize in this area of research. Some of the recommendations provided by the Boyd et al article will be critical in improving the practices in scientific research that ultimately contribute to this. In the case of the pandemic, I always find myself wondering how beneficial NIH funds could have been if they were redirected to provide care to highly impacted Black and Brown communities instead of being used to do poor research and/or research that is only tangentially related to the virus. In order to begin repairing the damage that’s been done, it will additionally be important to consider how federal funds are allocated to agencies like the NIH and CDC. Improper allocation of funds to these agencies can sequester money away from developing sustainable care programs in underserved communities and subsequently direct them to research practices that only reinforce racism in science and medicine.

GRAD 219 Course – The Black Experience in American Medicine – Week 2

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This is a guest post by Eliza Gaylord, Ph.D. Candidate, UCSF Developmental and Stem Cell Biology (DSCB) Program

What you publish in science is soaked in opinion – regardless of the objectivity it tries to maintain. What you publish in science is accessible forever – regardless of the truth it holds. And if science is opinion, and science is accessible forever, then by definition of the mathematical transitive property of equality, opinion-based published literature perpetuates throughout the years and is treated as fact simply due to its accessibility to read and cite. However, just because something was published does not mean it is sound or accurate. What are the consequences when this undying nature intrinsic to publication is mixed with ‘bad’ science, written to immortalize the author’s opinion instead of biological truth? One familiar example is Dr. Andrew Wakefield’s work published over two decades ago where he wrongfully claimed that the Measles, Mumps, and Rubella vaccine caused autism in children. Despite the retraction of his paper, multiple lawsuits, and the uncovering of conflicts of interest that inspired his original piece, thousands of individuals across the world still believe in his work over twenty years later and put their children at risk by refusing to vaccinate them out of the false fear of developing autism.

Though the harmful consequences from this specific example have only persisted 20 some years, another harrowing example of fabricated and harmful science has persisted for over a century: the collection of work centered on identifying physical racial differences. These studies relied upon the torture and robbery of Black people’s bodies and highlighted false ideologies of biological differences between the races to justify slavery and perpetuate racism. And doctors still reference and support these false beliefs to this day, many ignorant to the racist history that gave rise to the findings. These works are dangerous to the Black community, as they ensure implicit bias, inferior medical treatment, and structural racism will persist in the American health care system. Like the Wakefield study, a first step toward improving the Black experience in American medicine demands the identification and retraction of these false and dangerous studies. But beyond the retraction of these works, medical education programs must incorporate coursework to actively discuss and condemn these racist ideologies and the fabricated works that support them. 

GRAD 219 Course – The Black Experience in American Medicine – Week 2

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This is a guest post by Cambria Chou-Freed, Ph.D. Candidate, UCSF Biomedical Sciences (BMS) Program

Last week in class, we discussed the topic of reparations for the harms enacted by the U.S. government and medical system on people of color, specifically Black Americans affected by the U.S. syphilis experiment at Tuskegee and the Latinx/Indigenous communities affected by the U.S. experiment in Guatemala. My interest in reparations is bolstered by my heritage, my Jewish American ancestors who immigrated from the former Soviet Union prior to World War II. The Jewish community is one of the few communities throughout history that has received reparation payments for affected individuals (link: https://www.vox.com/2014/5/23/5741352/six-times-victims-have-received-reparations-including-four-in-the-us). Since 2012, Germany is estimated to have paid $89 million in reparation payments for the Holocaust—to countries such as Israel, but also to individuals, including many Jewish Americans (link: http://www.claimscon.org/about/history/). Though my family did not directly receive those reparation payments, they mean a lot to me, given that some of my ancestors narrowly escaped and what others who I never got to know about didn’t.

Many have proposed that Germany’s reparation payments could serve as a model, or at least a precedent, to support the case for U.S. reparations to Black Americans for slavery, including Ta-Nehisi Coates in “The Case for Reparations.” The U.S. syphilis experiment at Tuskegee represents only a tiny fraction of the legacy of slavery and the crimes that the U.S. has committed against Black people. Though the U.S. government has “paid reparations” through court settlements for the Tuskegee experiment, it’s clear that much more needs to be done. I can’t say that Germany has offered a perfect model or that we should be copying their methods, but it proves to me that large-scale reparations on behalf of a government can be made. Furthermore, it provides an example of payments made not only to a country’s own citizens, but also to foreign citizens. This would be the case for what the U.S. owes to the citizens of Guatemala affected by the U.S. Public Health Service experiment there. Reparations, of course means much more than monetary payments, and it means different things to different people, but the conversation has to start somewhere.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Mariko Foecke, Ph.D. Candidate, UCSF Biomedical Sciences (BMS) Program

Watching the retrospective on “crack babies,” it becomes painfully obvious how much panic can be caused by the results of a single study. I think it’s also a remarkable example of how, when we don’t look back on history, we’re liable to repeat the same mistakes. It reminded me of how, a decade later in the late 90s, alarm bells were prematurely sounded when the Lancet published Wakefield’s article claiming the MMR vaccine caused autism. Interestingly, I think there were a lot of similarities between the initial studies and subsequent responses:

  • Widely publicized by the media
  • Preliminary studies with a small sample size
  • The effect on minority groups
    • Women who participated in Chasnoff’s study were offered free prenatal care in exchange (which they would not have had access to/been able to afford otherwise)
    • Diagnosed with autism later and less often (particularly problematic since both “crack babies” and autistic children were considered to be more treatable/manageable with early intervention)

As a basic scientist, I think the retrospective also highlights how important it is to think about how we contextualize and speak about our work and how damaging it can be if it’s taken out of context.

GRAD 219 Course – The Black Experience in American Medicine – Week 2

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This is a guest post by Miguel Guardado 1st year biomedical informatics student, Biological and Medical Informatics Graduate Program (BMI) at UCSF

The use of race and ancestry in genetic research.  What do reparations look like?

The use of race/ethnicity as a variable in medicine and science is a highly debated topic, with a clear history of being used as a mechanism for racism in wanting to establish biological differences in a race to uphold white supremacy. To fully address why race is needed inside biological research, we need to preface this conversation on the impact eugenics left inside the academic institution. Understanding why race was created and used in eugenics needs to remind us of what this type of thinking represents.  In this reflection of the class I have been a part of for the past three weeks, I will explain why race and ethnicity are essential to medical research.  We need to understand how systemic racism will tell us social detainment of health, essential in understanding non-genetical interaction inside various diseases and their progression. A person’s race is not tied to biological traits and cannot be used to establish the genetic basis of disease, which eugenics sought so hard to achieve. Instead, we need to focus on an individual’s genetic ancestry and using this term separately to establish genetic relatedness and how this can also impact diseases. Overall, I argue that we need genetic ancestry and race-conscious thinking to uncover the underlying causes of various diseases, which will help reduce disparities in the medical system.

Unfortunately, this basis of using race inside science and medicine has been one of the prominent scars and legacy left by eugenics in the early 19th century. Fundamentally this field was established in the idea that a person’s genes determine their traits. Some of these trait variants are more valuable than the others, with clear implications on establishing white people’s genes as superior.1 This field grew significant traction in the early 19th century, with famous mathematicians such as R. A Fisher, Karl Pearson, Francis Galton adding mathematical rigor to these ideas. I cannot describe all the horrors this field had, but the idea of adding mathematical and scientific rigor to establishing biological differences in the race lead to political and social impact that still last to this day. These ideas did not die in the late ’50s when these courses disappeared post WW2, the people who were educators in this field needed to transition to something that seemed more “woke,” still passing on generations of knowledge that these population differences were biological and somehow race was tied in this. How does published scientific records of white individuals’ genes being superior affect generations of people of color who were taught our entire existence is “scientifically” inferior? How does a generation of people recover when forced sterilization was done on black and brown people with a eugenics framework? This generational trauma leaves scars that affect us to this day! The field I sit inside today, population and human genetics, came from a field that was a predecessor of eugenics training. However, being reminded of this reality is needed to entirely reject this branch of science and understand the scars race-based biology has made to the BIPOC community here in the United States.

Therefore, tackling race/ethnicity inside genetics research has the stakes it does to get this answer right. Having generations of people taught and believing that genetics is tied to an individuals’ race and why we can see why there is so much mistrust in using these ideas in science correctly. We must be accountable to the past of eugenics as scientists and help engage with every community here in America who have scars from this framework of thinking. Race and ethnicity have both been used as social constructs for categorizing people based on perceived distances and cultural ties. The concept of race is constructed as a tool to categorize people to validate racism2. Understanding how living in a society built on institutionalized racism, how it intersects with access to health care, and many other systemic barriers are why we need to have a lens of the race inside medicine. We must not have a colorblind approach to looking at race inside medicine, but we must not confuse that race is biological, but rather racism. Some factors are not biological in understanding the progression of diseases, such as living in a food desert, having proper access to water, or proper access to health care, impacting how a disease is the onset and develops.  We must do a better job as researchers in our field to define better variables and terms to predict the actual outcome rather than the direct use of a race-specific variable. Suppose we are conducting a study, and we find that race is a clear signal in our model. In that case, we must do a better job to explain the underlying structure in that variable that is tied to system racism to rightfully eliminate the direct use of a race variable in clinical practice. Trying to understand non-genetic causes of health inequities across different racial, ethnic groups, community efforts, and outreach is essential to finding the connections to disparities and treatment. 

Genetic Ancestry, on the other hand, can be derived of a ‘subset of paths through it by which the material in your genome has been inherited’.3 Genetic Ancestry tries to estimate individuals who share genealogical ancestry or find identifiable ancestors in a family tree or pedigree. Being reminded that we are one human species, knowing we all have shared common ancestors can help us understand why we need to take care of what genetic ancestry can tell us about the underlying genetic architecture that can affect biological traits removed of the notion of race and ethnicity. Mathematically speaking, genetic ancestry is seen as a continuum, representing that this term is used under a measure that can never be fully used to derive detailed categories of different population groups since we all at one point came from a common ancestor. There is much benefit to looking across different “population ancestral groups” when doing genetic research studies because looking at genetic signals found in European ancestral groups will not always correspond to the same signal in other population groups.  In all reality, when trying to take a continuous variable of genetic ancestry and condense it to a set of population group categories, there will always miss out on the groups that are underrepresented in that cohort. We must be reminded that the algorithmic nature of this type of clustering analysis is always arbitrary choices made by the scientist and that these groups do not represent an actual population. This, however, does not undermine the field of population genetics and understanding how the complex human architecture contributes to various biological diseases and how important it is to get the diversity of participants from all backgrounds into these studies.  Disparities are present inside this field, with most genetic findings we have only for people of European ancestry.4 We need to be careful about what claims we make based on genetic ancestry and understanding how they are independent of race and ethnicity.

There can be a correlation between genetic ancestry and race but understanding what both factors are telling us and how they are both needed to eliminate disparities. Understanding the social aspect of diseases and why racism is a biological variable acknowledges the use of community-led research and why we need more community lead engagement. We also need to gain more trust with these communities, based on generations of systemic racism leading to this massive distrust. Increasing the diversity of black scientists and doctors and creating an environment that retains them in academia and medicine is a great place to start.5 As scientists, we must reject making claims about race being biological and understand the social constructs that make racial groups suffer at disproportionate rates. If we ever want to solve this disparity, we need to accept the dark history of science and the harm it caused to Black people and make the proper reparations.

This is a topic I am very engaged to learn over the course of my PhD, any feedback or comments are welcomed.

Refences:

  1. Understanding our eugenic past to take steps towards scientific accountability https://genestogenomes.org/understanding-our-eugenic-past-to-take-steps-towards-scientific-accountability/
  2. UCSF DEI primer https://mentoring.ucsf.edu/dei-resources
  3. What is ancestry? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7082057/
  4. Analysis of polygenic risk score usage and performance in diverse human populations https://www.nature.com/articles/s41467-019-11112-0
  5. Why Black doctors like me are leaving faculty positions in academic medical centers https://www.statnews.com/2020/01/16/black-doctors-leaving-faculty-positions-academic-medical-centers/
  6. A Time for Reckoning with Racism https://www.nejm.org/doi/full/10.1056/NEJMms2029562
  7. U.S. Scientists’ Role in the Eugenics Movement (1907–1939): A Contemporary Biologist’s Perspective https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2757926/

GRAD 219 Course – The Black Experience in American Medicine – Week 1

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This is a guest post by Nebat Ali, PhD Candidate, UCSF Biomedical Sciences (BMS) Program

The readings from this past week displayed the many ways racist practices dating back to the era of slavery continue to permeate our scientific and medical institutions to this day. The harm caused as a result of failing to address the racist practices within these systems can be even more damaging when considering the pretense of objectivity they’re presented under. We are taught that science is built on integrity and our practices are free of bias when in fact many scientific and medical policies are rooted in racist ideologies. It’s also interesting to consider how our institutions are built to reward these practices. There are scientists who have been able to build their careers on the basis of attributing disease outcomes and biological observations to race. This erasure of the racist policies and socioeconomic factors that drastically impact a person’s biology and wellbeing is incredibly damaging and only takes us further from addressing the true source of health disparities in the first place. When findings from these works are translated and applied in the clinic as a means to save time and allow doctors to see more patients, they can result in misdiagnoses and delay medical intervention, ultimately causing more harm to groups that are already marginalized.

As a Black immigrant the basis of these practices is something I’ve thought about a lot as my family and I navigate the healthcare system here in the US. As someone who also has the privilege of having lighter skin, I also think a lot about how colorism and internalized racism in the context of healthcare can additionally impact one’s health and wellbeing. An individual’s proximity to whiteness and the way that is perceived by a physician or healthcare worker can have a strong influence on the nature and quality of the care they receive. Furthermore, institutional race-based practices likely reinforce internalized racism in health care providers, further compounding the harm done to Black and marginalized groups as a result.