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

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

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

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

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

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

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

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

This is a guest post by Aris Tay, PhD Candidate, Bruce Wang and Diana Laird Labs, Developmental and Stem Cell Biology (DSCB)UCSF

Watching “Belly of the Beast: survivors of forced sterilizations in California’s prisons fight for justice” from an intersectional lens reminded me of social Darwinism. The theory of natural selection and survival of the fittest permeates biology and ecology. Faster lions are better at catching prey and thus are more likely to survive, so of course lions as a whole would prefer to select for speed and athletic prowess. However, does this apply to human society? It is theorized that humans implicitly select for attractiveness when choosing a partner and as a result the human race has supposedly gotten more attractive over the centuries. But with the industrial revolution, betterment of healthcare, and resultant increase in lifespan and quality of life, several “less fit” traits have been allowed to remain in the gene pool. There are several diseases, with genetic causes or predispositions, that are typically fatal without treatments. If these people died of such a disease, then the genetic mutation would not be passed on and eventually dwindle out from the gene pool. However, we are now able to treat such a disease and thus the mutation stays. 

From a purely logical, theoretical, and utilitarian standpoint, human society would probably be more “fit” if the people carrying these mutations were not treated and died. And because Darwinism and social Darwinism is such an accepted and prevalent theory in the medical community, parents undergoing in vitro fertilization are recommended to choose the embryo without any genetic mutation or harmful predispositions. Many disabilities, such as blindness, deafness, autism, and achondroplasia, are symptoms of or outright caused by genetics and are theoretically preventable during in vitro fertilization. However, many people in the disabled community take pride in their disability and the culture that has been created around it, not entirely unlike black American culture. If a medical professional did not discuss with the patients and chose to implant the undiseased embryo as opposed to one with a genetic mutation that could result in deafness, would this be equivalently morally reprehensible as the forced sterilization of incarcerated black women? Would this take society a step closer to eugenics? 

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

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

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.