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

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 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.

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

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This is a guest post by Natasha Puri, PhD Candidate, UCSF Tetrad Graduate Program

In this class we have focused more on racism in medicine, but it has encouraged me to apply what we have talked about to research as well. When I read the very first paper for our class, Racial Categories in Medical Practice; How Useful are They? in PLoS Medicine, one thing that stood out to me was the author list. Many of the authors were experts and/or students in both STEM subjects like Cellular and Molecular Biology, Biochemistry, and so on as well as in fields like African American Studies, Women Studies, or Sociology. Many biologists like to think that they are searching for fundamental truths, but how honest are these when they are not considered within the context of our society? An example that comes to mind is the Covid vaccine. I hear people in my field talk about the vaccines simply as this amazing scientific achievement. And yes, the fact that the vaccines are so effective and started being distributed in the US so early is remarkable. But what is glaringly less spoken about in these circles is the inequities in the distribution of this life-saving scientific achievement, why many people of color have been unable to access the vaccine, or the reasons why some have been hesitant to get it. I think that it is too easy for scientists to brush off the people who don’t trust science, but we need to look more deeply into the roots of the distrust, and be more active in making research accessible, and transparent too. The paper also mentioned epidemiologists and other scientists who propose multi-level models for understanding racial disparities in health outcomes, from society to an individual’s lifestyle to the cellular level. This supports the idea that a holistic and interdisciplinary education is so valuable, especially when studying in health and medicine-related fields.

My last thought is that if we are to continue to educate ourselves and improve the health outcomes of historically marginalized groups, this research and others that focus on racism in medicine and science need to be well-supported and well-funded. That means that this research must get support in particular from faculty and research institutions themselves. While it is invaluable (and necessary) for medical and PhD students to learn the painful story of the Black experience in science and medicine, our professors need to learn these truths as well. I hope that Universities can start making more classes like this available not only to students, but available and mandatory for faculty as well.

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

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

During class this week, one major topic of conversation was the forced sterilization of incarcerated individuals in California, often people of color, along with the eugenic principles that this thinking perpetuates. Dr. James Heinrich, an OB-GYN at one of these prisons, was quoted in an NPR article1 claiming that the amount of money spent on these procedures was minimal “compared to what you save in welfare paying for these unwanted children–as they procreated more.” My jaw dropped when I read this horribly prejudiced statement. Every individual is entitled to personal bodily autonomy. Although he appears to be referring to surgeries that were completed voluntarily, when a person in a powerless position is under coercive pressure, there clearly cannot be consent.

 Although the forced sterilizations in the prison system being discussed are said to have occurred between the years of 2006-2010, such atrocities were occurring long before and continue today. In September 2020, a nurse working at a US Immigration and Customs Enforcement center in Georgia alleged that detained women were undergoing similar procedures, including unnecessary hysterectomies2. As of December, more than 40 individuals had submitted written testimony in a legal petition against the facility3.

So where do we go from here? I don’t have a good answer. Shutting down one problematic facility doesn’t prevent such procedures from happening at a dozen more. We are clearly unable to rid this system of the discriminatory beliefs it was built upon. As we’ve discussed, the roots of the issue must be addressed—and there are many.

References:

  1. Chappell, Bill. “California’s Prison Sterilizations Reportedly Echo Eugenics Era.” NPR, 9 July 2013, www.npr.org/sections/thetwo-way/2013/07/09/200444613/californias-prison-sterilizations-reportedly-echoes-eugenics-era.
  2. Narea, Nicole. “The Outcry over ICE and Hysterectomies, Explained.” Vox, 15 Sept. 2020, www.vox.com/policy-and-politics/2020/9/15/21437805/whistleblower-hysterectomies-nurse-irwin-ice.
  3. Bekiempis, Victoria. “More Immigrant Women Say They Were Abused by ICE Gynecologist.” The Guardian, Guardian News and Media, 22 Dec. 2020, www.theguardian.com/us-news/2020/dec/22/ice-gynecologist-hysterectomies-georgia.

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

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

This week, I was very interested in our class discussions about how race is used as a variable in medicine/biomedical research and about the contexts in which this might exacerbate vs. combat health inequities. I especially appreciated the UCSF debates over the use of genetic ancestry vs. race in eGFR and polygenic risk score calculations. What stuck with me was the question: how can we, as scientists and physicians, feel comfortable using race as a variable in the same way we use quantitative, measurable variables (ex: blood cell or RNA transcript counts) to make research claims and clinical diagnoses? We know that race is an inaccurate proxy for genetic ancestry in many cases. Furthermore, when we want to use race as a proxy for social factors, I wonder whether in the future we will move toward incorporating other, more precise variables instead (such as to what degree a person experiences racism in their life, or what neighborhood they live in, an example given in class). As a mixed-race person, it has always made intuitive sense to me that race is not clearly defined or discrete, even when I didn’t have the words or data to back this up. Similarly to what Dr. Grubbs argued in the debate, I wonder how researchers would calculate my risk for polygenic diseases if I don’t fit accurately or precisely into their race-based model?

Another question that came up in class is how epigenetics might be used in medicine/biomedical research. Epigenetic marks are thought to encode experiences and environmental factors such as trauma and stress at the molecular level, and there is evidence that epigenetic changes to DNA can be passed on through multiple generations. Many people see epigenetics as an opportunity to study the effects of social factors such as racism on human health, and I certainly see the potential benefits of this. However, I also worry that some people will use epigenetics as the next generation of scientific evidence to back the claim of “biological differences due to race” and that a new form of discrimination could emerge as a result.

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

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

Assuming that the color of someone’s skin explains their life history seems ridiculous when it’s phrased that way, but it is easy to see how doctors can fall into the trap of using racial categories in their practice, especially given the pressure to assess their patients quickly. This article made me think of racial profiling—it is understandable that authorities would want a quick way to identify potential suspects, but to conflate race with the likelihood of committing a crime is inappropriate. Race is a much less important factor in both community safety and medicine than socioeconomic, geographic, and familial backgrounds. The author makes it clear that while taking the time to understand a patient’s background may not be as rapid, it is ultimately more efficient, because it will lead to fewer misdiagnoses.  False assumptions about a patient’s condition based on their outward appearance increases the time it takes for an accurate diagnosis, which in the worst cases can be deadly. A country largely segregated by not only race but also geography and socioeconomic status became a country in which the three were conflated and each race was assumed homogenous, when in reality our communities have never been more diverse. Each person has a unique background, and “if a physician simply diagnoses ‘race,’” that background, including “environmental exposures, family histories, the stress of dealing with racism, access to and quality of care [,] may be left unexamined.”