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Data is Not Neutral: Biomedical Data, White Supremacy, and What You Can Do

K. Joy Payton
Data Educator, Data Scientist, Community Organizer at Children's Hospital of Philadelphia
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R/Medicine 2020
August 29, 2020, Online, USA
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About speakers

K. Joy Payton
Data Educator, Data Scientist, Community Organizer at Children's Hospital of Philadelphia
Paulette McRae
Assistant Director, Specialty Programs and Diversity at Children's Hospital of Philadelphia

As a community organizer and data educator, I help activists, elected officials, and ordinary citizens make use of public data about their communities. Within Reclaim Philadelphia, this includes working in the area of Mass Liberation to quantify and reduce the human, societal, and public health impacts of the carceral state. I have limited availability to work with individuals and small teams who want to increase data enablement in progressive and socialist campaigns. At O'Reilly, I enjoy the camaraderie and professional growth of online webinars. Currently, I am an occasional instructor in Google Cloud Platform, particularly BigQuery.

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About the talk

This video is part of the virtual useR! 2020 conference. (K. Joy Payton, Paulette McRae)

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Everyone, welcome to the third talk in this action by Joyce McRae. The title is data is not neutral by a medical data, white supremacy and what you can do. I'm excited to be here at Pilot. McRae is having some technical difficulties. So I am going to try to do her side of the talk as well, and hopefully she'll be able to join us shortly. So call it. McRae is a neuroscientist at chop who works and research Administration. And I am an educator who works in the artist program, which you may have just been hearing about. So I'll quickly go over this

slide. This is my colleague, pull it as a child and I'll let her talk about it then that she's able to to get into the meeting. But what's interesting about this photo is that Paulette represents a lot of be under-represented groups that we know are not fully represented in science as a woman as a black person as someone at growing up in a family in which college at was not typically expected. She really represent a lot of these groups and this is a drawing that she did as a child.

And what's interesting is that she later went on to become a brain scientist. And the brain is not even if they stood there which we both found sort of amusing. A poet and I want to share with you a little bit about why data is not neutral. During the expectation that we have sometimes that our data is somehow more and more representative of science than we are as neutral is not neutral and talk about two aspects of it. So I can you not think you did this light already? So I will just jump in, right, where you were Perfect. So we will be talking about

why data is not in neutral and specifically I want to talk about two out of the many reasons that we can cover. Why did it is not mutual? So what is representations? That's really the town of people not being representative of the population studies, recruiting research, subjects and executing and analyzing studies, where there is a lack of representation. For the second point that I will be talking about is locked in the black community and the medical community.

So here we are looking at data from BNSF, the National Science Foundation for Science, and Engineering positions. On the right hand side of your screen, you can see the percentage representation for the u.s. population. On the left hand side, you can see the percentage with in science and engineering positions and their women in general, black men, black women, Hispanic man in his face and Engineering, but across all stem fields. So the next life, please do in terms of unequal represent something that most of us on this

call or from I'm not going to spend a ton more time talking about that. I really want to go and spend some time talking about the lack of trust between the black community. And then we're going to spend the bulk of my time and just because the issues around trust are often less identified as a driving force behind the under-representation at BC in medical studies. However, this mistrust is real and it is just so we can go to the next flight. The one thing that we do know is there is low participation of African Americans

across studies, and that is regardless of the study light, I'm as well as the type of disease at things that includes studies online on on all timers disease, on Different Stroke. So that is a mistrust of academic and research institutions and the investigators driving these studies. And that is one of the most Salient and significant barriers for African Americans and their lack of participation or these types of study. Do one of the driving factors of mistrust is unethical research practices. I'm in here, I'm just letting out two examples on one is the Tuskegee

syphilis. Study question, 1932 or 1972. The other is a case of Henrietta Lacks. I'm hopefully most of you are aware of these examples and in the interest of time, I'm not going to go into detail on either one of them, but if you're not going to lie, I do encourage you to look them up and get familiar with them. But these are two prominent driving factors as to why African Americans tend to not be involved in a research study. What I would like to do is spend a little bit of time, looking at some less well-known examples of an ethical research practices. And first I want to

clean out the charm, I had some hope yet which is the fear of a Healer. So this year with in Black communities is real, and is Justified, and hopefully, if it go through a couple of examples, you'll understand why there is an application for the sphere. That Jim was subjected to various experiments, including being put on top of the hot pit of mobile holes to study the effects of sunstroke and ultimately potential remedies for that. I think there was a little but I think we're all back, right. When we

look at the cases of doctor McDowell, he is credited as the father of the abdominal surgery. I'm he discovered the ovariectomy and performed a number of these procedures experimentally on enslaved women. I'm and the first piece done on a white woman is the one that's well documented that was done on the property, but no one mentioned obviously like women that were subjected to experimental procedures before her. The other example is. So that's the father of modern Gynecology. Find your surgery that really treat soda pop of people's related to childbirth but

again about the way he got you to those surgeries, I'm there were a number of enslaved. Women of the surgeries on one of which was an Arco, she was a seventeen-year-old girl, he did over 30 on her alone. Do surgery to be done without anesthesia and the driving force there wasn't because they didn't have a seizure or access to Anesthesia. It was that there was a prevailing belief that blasted not feel pain or anxiety. So there's no need to use anesthesia.

You can say, okay well that was that was a long time ago. So let's look at things a little closer to Modern Times And we can look at some experiments that would be so doctors. Stanley did a number of experiments between 1913 and 1951 are prisoners in San Quentin or California. Those experiments that he did included on experimentation, with sterilization pencil treatments for the Spanish flu, and most disturbingly on some particular transplants that he did between.

We can also look at holmesburg prison I'm in Philadelphia where doctor quickman a very well-known and prominent. Sorry, dermatologist conducted, a number of studies between 1951 and 1971 and he's actually the founder of Retin-A or retinol a what you guys may be familiar with the number of skin test for Mary, shampoos with powder deodorant and that may all sound very benign. But when you think about the prisoners to test these types of products, a lot of time to skin is exposed to heat lamps

and other types of of manipulations to the skin to test. You know, how these products work Interstate. I'm, he also later in his career with mind-altering drugs, as well as dioxins chemical pollutant. And to move even closer to more pregnancies, there was a number of studies looking at nothing to talk about one of the tickler. The genetic link to aggression in black boys, to study in particular required, the withdrawal, from all medications that including asthma medication as in

something else, very prevalent in the black community. It included ingesting a low protein diet and overnight stay without Harris Teeter, boys. That are raising from 7 to 12 years old. I'm withholding water hourly blood loss and administration of informing that's part of the market. Since I'm, this drug is known to increase serotonin levels and the Associated Press been going on in this study was done in the 90s, so we can go to the next flight. The problem and the driving force of this mistrust runs deeper than just in type of black individuals

that participated in research studies, because there is an there wasn't is rabbit mistress and buy season medicine. So we can look back to 1851 with, Cartwright was commissioned to write a report about the nature of the black race. So naturally at that time, I'm he's talking about enslave black people and when he didn't fit, this was observing them. And what was that black people have a lower lung capacity and having them forced to work by white people was good for their help. Also

came up with the psychiatric diagnosis, which is the disease that causes mangos to run away. So really saying that any slave that was trying to escape. So again that station 50s but we can come much closer to present day and see a number of examples where there are mistreated by season medicine. I'm Summit tubing, be under treatment of blacks. As it relates to pull the 43% of blacks vs 2060 kind of wipes because he's no pain medication for long bone fracture. Those are known to be extremely painful. You may think this is just

related to adults like children are also subjected to this lack of pain treatment as Alexa was appendicitis or less likely to receive voice than white children. The Silver Lining here is this is probably the driving force. Why the opioid epidemic is not as rapid in the black community as other and if we were in Residence and found a number of them, hope Foster Wallace about biological differences between black and white. I'm over 50%, believe that blacks have thicker skin and this Actually goes back to the

1850s studies where they're trying to understand the difference in black skin and white skin and subjected slaves to experiment. There's also a belief among over 25% of medical students and residents that blacks have less than his nerve endings. Therefore don't receive the same way. We know both of these are not true but again this is is still very prevalent in in medical training and up so we can go to the next slide and with that I'm these are two reasons out of a number of factors that are not that are really driving part of why Jada is not neutral.

So we we raised a piece that is not at this point. I will turn it over to Joy. Who can talk more about where we go from here? So first of all, I want to speak about the term white supremacy, which can be a very scary term for people, and I just want to highlight that white supremacy is the trend music, many people use because whether or not I am intentionally, overtly racist person, I have been shaped by societal influences, that subtly tell me that white people are better than, or Superior to non-white people.

So, what do we do with our data updated? Because it's been tainted, by white supremacy, for example, in this Infamous Boston, Housing data set that. I was given as a graduate student in which there is a single variable, that carries a lot of predictive wait. I won't go into why this is an unacceptable dataset, but just keep in mind, there's probably a lot of collinearity Automatic language and not all races are included. So the data is impoverished. But if we want to keep our data. Just threw it out. Some of the things

that we can do is ask ourselves if our findings are truly generalizable. We can stick stickly, describe our lad staff, and we can normalize the disclosure of bias. And this is a dark so I actually didn't use our to look at my own biases. My own complicity in white supremacy, and realized that I did a Chi Squared and did it official ization. And that information is right there for you, to take a look at so we can use our to take a look at that. And I think that's all the time we have. I think, I just heard the bell ring sense of humor slides that

you'll get to see it. When you take a look at the the slides at that are sent to you if you're interested in it. Thank you so much, everyone. Thank you so hard for the reason that we stop this, a little bit early is to encourage questions and an in conversation. So I guess, as a first question, it seems to the the unethical treatment in the beginning. It seems like there's almost this movement from these, you know, egregious experiments to do more this this issue of neglect. In terms of in terms of treatment, is that a fair thing to

say? And then that probably becomes a more difficult thing to be able to point out in, in to deal with the, what are the, what are the strategies for 4/4, kind of compensating or dealing with that. And that the fear that people have is justifiable, there are also studies out looking at the treatment that last received for the ceilings. Relative to two white going to the same position. So they're not treated equally their symptoms aren't treated equally their course of medications. Last time, there's not

going to be, there are a lot of inequities and we're seeing a lot of that actually play out. Now with the covid-19, as well as the increased imagepro that was seen in and women of color. So how do you get over that. It's real and then you have to make sure that the people are being trained to administer or be the medical professionals are aware of this history and are aware of the innate by that, that they have or that they may have. And what you thought you addressed that in addition, the other thing you want to

do, you make sure I want to make sure your medical community is representative of the community in general, right? So diversifying medical professionals, Who will likely bring a different perspective to the table so I can go to some of the strategies that can be put in place. How do you feel about this in terms of covid-19 are they are trying to push out vaccine when minorities may may not be well represented. Yeah, that's that's a great question. Not only

made a not be represented in terms of the trials. Again, with this this distrust within the black community of the medical community, I think there will require a lot of convincing that this is. Okay, this is space. We, we can look back at the polio vaccine where that was ruled out quickly and erroneously. People were actually given active the polio disease instead of with with certain things. I'm so I think it is really is going to require a lot of of education and Outreach on part of getting the black community on board with with equal.

Great Lakes, the wet. So another question is that, when we do data analyses, especially in the medical context, a lot of times race is one of the variables that we use and we see significance and has become something that we a lot of times have to detangle, right? Because it races Jenna is a lot of times of proxy for her for a couple things. You want any Behavior or it sometimes, it's even though you know, it's it indicates a genetic variant. So how do you think about those? If you know, when you see there is that there is significance but it's not variable cash

characterized. Joy. I would put that one to you. A lot of the things that we can do our do statistical analyses of collinearity, so which of our variables, which of our features are willing to one another. So, you know, it's not surprising that the Boston Housing at me to set includes brace problematic language aside because we do know that race and housing prices are related. But we have to ask ourselves is why is that? Is it practices that have led to

the gradual and Insidious destruction of non-white through neglect lack of services, redlining criminalization of Blackness, criminalization of poverty. So instead of just looking at race Amazing, Race carry, so much weight. Let's look at police presence. Must look at how many supermarkets there are. Let's look at College completion. I think we settle too easily for some Traffic markers when we could go deeper into things like to community disorganization index, which measures a

lot of different socioeconomic status in the years. So I think like statistically don't be lazy, do some feature engineering and because we do know that race is important and carries a lot of predictive power. But why does it carry predictive power? I think we need to go a little bit deeper and understand what are the variables hidden behind the variable of race. Okay, thanks very much. Enjoy the time. Now, if you have more questions, you know, you can contact either one of them. Thanks so much, everyone.

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K. Joy Payton
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