Inclusiveness in the Race for a Cure: Communities of Color and Medical Research in the Pandemic Age

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Inclusiveness in the Race for a Cure: Communities of Color and Medical Research in the Pandemic Age

six weeks we will over six weeks we will have the opportunity to learn about pandemics from a wide variety of perspectives i look forward to sharing this journey with you in the audience tonight we are joined by a variety of students virtually both incoming and current as well as alumni faculty and staff as well as community members we are grateful that each and every one of you are here and we hope that this is a phenomenal experience at the conclusion of tonight’s presentation dr laws will be answering a few questions please note that you will be able to submit questions using the q and a buttons on your screen i’d now like to introduce tonight’s presenter dr terry laws dr laws is an assistant professor of african and african american studies and religious studies at the university of michigan-dearborn she teaches courses in womenist and black feminist religious thought african-american religious experience and medical ethics her research examines social and cultural issues in health care with an emphasis on african american religion and health and health inequity her publications have appeared in the journal of religion and health pastoral psychology and religion and politics she has forthcoming essays in christian theology in the modern sciences published by tnt clark november 2020 and the religion of white rage published by the university of edinburgh press september 2020. let’s receive the doctor of philosophy and religion from rice university in houston texas a master of divinity from the internet interdenominational theological center in atlanta georgia and a bachelor of business administration from the university of cincinnati during her doctoral studies professor laws completed a bioethics fellowship at the university of texas md anderson center i am so great to have dr laws presenting with us tonight and now i will turn the floor over to her good evening thank you so much to the committee including dr paul drouse dr amy findley mr scott riggs and andy beverly thanks so much for all of your assistance and getting us here this evening and let’s begin our journey so tonight i’d like to talk for just a few minutes about uh inclusiveness in in um in the in our search for uh the cure for this current pandemic so we’ll be talking about inclusiveness in the form of race but please understand that um there are other forms of inclusiveness but we are focusing on race this evening is that is the area of my research for our agenda this evening we’d like to begin by giving a little bit of data about michigan and the united states the current uh situation about the pandemic we’re going to do a spoiler alert so that you know very early where we’re going in this presentation we’ll do a brief historical presentation on race and ethnicity in medicine and medical research and the disparate experience of race and ethnicity or groups who are raced um we will then do an introduction to the discussion question that i’d like to offer to you so that you can have a conversation with your trusted that’s friends and family who you trust um on your own time and then of course we will have a quiz that you’ll need to do by next week our current experience the michigan experience as of july 18th is that we have about 18 81 338 confirmed and probable cases of cobit 19 in the state of michigan we have had approximately as we understand it 6 364 confirmed and probable covet death that gives us a fatality rate of about 8.4 percent and again we’re talking about the experience of raced groups so one of the things that we understand in michigan is that african americans are about 14 of the population

and yet have experienced about a 38 disproportionate death i also want to lift up another area of disproportionate death and that will help us to understand where we’re going on this journey this evening and that’s that we’ve had 2005 deaths in long-term care facilities as well as among residents as well as staff and then finally i’d like to point out in the united states experience as we currently understand it that african americans and native americans have been about five times more likely than white americans to to be hospitalized with covet 19 and that next persons have been about four times more likely to experience hospitalization so we have uh in the in the uh experience of race we want to talk for a few minutes here on this slide one of the most important pieces of work when we’re talking about race and medical research which is going going to be the main focus for us this evening is that is that is a book written by harriet washington harriet washington is a journalist and a medical historian and bioethicist she published in 2006 a book by the name of medical apartheid of late you may have begun to hear more about this this book it is 500 pages and i’m going to give you a spoiler alert because 500 pages is quite a bit but before we do our spoiler alert i’m going to talk just a little bit about particular forms of race medical abuse or medical racism washington’s text in those 500 pages most from the colonial experience in the united states to the 20th century and in doing so she she’s writing as a historian and in writing as a historian we want to find the documents that support what we understand about about the experience of particular groups in this text then she has yes journals that are written for example by physicians at the time but she also has something unique and that is that she has the she has the voice of persons who experienced these medical experimentations and i want to lift out then one particular experience the experience i’d like to lift out is that of john brown john brown is a was a was a man who was enslaved in georgia during the 19th century he eventually escaped slavery and lived out the rest of his life in england in his living out the rest of his life what he did was to was to dictate to a writer his lived experience and in his lived experience part of what he includes is that he was the subject of a physician’s medical experimentation so the story goes like this that john brown was owned by a man named thomas stevens stevens became ill and in his becoming ill stevens was very grateful to the doctor who eventually helped him toward recovery to express his gratitude doctors that dr hamilton request to be expert to i’m sorry to express his gratitude that mr stevens offered to dr hamilton anything that he felt that he could share and what hamilton requested was the use of his slave now according to brown in his memoir mr stevens did not ask dr hamilton what it was that he wanted with with mr brown and so we’re going to pick up here by if you will allow me just to read a little bit of the story from brown’s perspective now it so happened that this dr hamilton had been trying a great number of experiments for the purpose of finding out the best remedies for sun stroke remember there in georgia hamilton ordered a hole to be dug in the ground three feet and a half deep in three feet and a half deep

two feet and a half wide and into this pit a quantity of dried red oak bark was cast and fire was set to it it was allowed to burn until the pit became heated like an oven when the embers were taken out a plank was then put across the bottom of the pit and on and on that a stool having tested with a thermometer the precision listen to the precision having tested with a thermometer the degree to which the pit was heated the doctor made me strip this is brown talking and get in he did so and only my head brown says only my head being above the ground he’s in the pit and only his head is above the ground he then gave me some medicine which he had prepared and as soon as i was on the stool a number of wet blankets were fastened over the hole this was to keep in the heat it soon began to tell upon me but though i tried hard to to keep up against its effects in about half an hour i fainted i was then lifted out and revived the doctor taking a note of the degree of heat when i left the pit end quote hamilton’s goal dr hamilton’s goal was to sell the concoction that best seemed to revive john ultimately he made a pill of flour which according to the administration of the drug had to be dissolved in cayenne pepper tea in order to give the solution and as we understand from brown then dr dr hamilton so the concoction and became wealthy from it next so our spoiler alert one would think that in these 500 pages of horrific histories such as that which we heard from john brown that harriet washington would then be saying african americans would not and should not participate in medical air experimentation spoiler alert she actually says something quite different so let me read to you the the middle of this uh passage that i’ve lifted out from the 500 pages i want to emphasize again the 500 pages but on page 387 so you always have to read to the end on page 387 washington says this african americans desperately need the advantages and revelations that only ethical essentially therapeutic research initiatives can give them the reticence or hesitance of african americans is the reasonable and understandable result of a horrendous history but it lags behind progress what washington wants us to understand is that the history yes is real the racism that has occurred in medicine the racism that continues to occur in medicine is a real experience and yet there’s something to be gained because without participating in medicine fully without participating and met in medical research fully the gaps that occur in health disparity and health inequity cannot be minimized that’s our aim so that’s the rest of the journey that we want to explore for this evening so let’s talk then a little bit about how it is that we got here so now you’ve heard the spoiler you know where we’re going let’s talk a little bit about how we got here and for that i’d like to show you a very brief film don’t drink

okay my film seems to be missing all right so sorry thank you okay here we go sound right here i can’t see it is oh thank you no i think it’s not on i think the sound is not on you can see the sound okay please bear with me now my grandmother tells a story of hospitals in her day one of barriers one of trauma one of fear when we are sick she pulls remedies from a tattered notebook recipes passed through generations of those misunderstood by the world around them she ensures this cold this ache this fever will break by morning all we need is this prayer this herb this belief that better days are coming she doesn’t speak of bad health

she says with stern eyes only speak life a lesson a warning and a hope in one package words birthed from a time when health care didn’t look like help for us i feel this chill down my spine when i am ill when my only option left is a doctor’s office or the never ending maze of a hospital the fear that there will be assumptions about who i am that things will be ignored like culture and beliefs that i won’t be heard that history repeats itself fear that these hallways will be the same broken roads instead of bridges to new understanding i envy those who don’t have to sit with cross fingers hoping envy their peace of mind and comfort all anyone wants is to be understood to be heard to be told that help is actually on the way very good so what you should have heard from the film is that the young woman who is speaking is speaking from the experience of her her grandmother which then is becoming her own lived experience so one wonders often when we’re talking about social groups and their culture how it is that we can say that an experience that meant something to john brown could mean something to say terry laws in the 21st century culture gets spread from generation to generation and in that film clip what we heard was the young woman speaking about not just her own experience but the experience of those before her so let us let us think about john brown for example he shared his memoir we can read it but if he had relatives who he shared it with there would he would also have been sharing not just his experience but all of the feelings and distrust that was built up in the reality that dr hamilton was conducting experiments upon him he’d been lent to the doctor specifically for that and not only then was he lent but along came the the distrust that was built up from the fact that he used john brown’s body and then concocted flour dipped into cayenne pepper tea which was supposed to then be a remedy for sun stroke so we understand then that culture and history and experience all work together in our understanding then we can see how in health inequity works within race and culture and so let’s go a little bit deeper let’s find out for example what do we mean by race race race is a series of categories these categories have been made up by researchers or pseudoscientists we would refer to them now starting hundreds of years ago we call this social construction in that it’s been made up right and when we say that it’s been made up what we mean is that the categories have some level of flexibility for example in 1930 we had a census category in you in the u.s called mexican we’ve not used that category since when we think of the continent of africa we generally think of africans as black but in the north in the north african nations those persons fit into a category that in the u.s we call white so this made up or this social construction has some level of flexibility and one of the things that we should understand is that the category called white is the category that we always

want to protect a second phrase that we don’t you we don’t just use these categories but we also also want to we also want to make sure that we understand that these categories are ranked all right and thank you okay want to make sure you can see what i’m talking about here okay all right so we’ve talked about race we talked about the ranking and um now we want to talk about the fact that um health outcomes are connected to these categories and these ranks and that uh what we some of you will be familiar with the term social determinants of health and that simply refers to the fact that um health outcomes are often related to factors other than just the physical factors they’re related to factors such as education adequate income adequate housing and employment and one of the things that we’ve understood during covid is that the um experience of some groups is that we learned that they have less less education less adequate housing less adequate income and that matters because for example if if i’m living in a multi-generational household and i go out and am exposed and i bring that back to the elder with whom i live that drives up the exposure possibilities for that elder and these are in fact some of the factors that we have seen so when we look at that that that possibility of the young person who may be working in that skilled nursing facility or in that assisted living facility that we talked about a little earlier that those numbers those persons who are providing care in that nursing home may in fact then be be a person who we would understand maybe living with their grandmother for example so now the person who’s living in the nursing home has been exposed as well as the grandmother with whom the person lives with whom the worker lives next we want to then bring in the idea that we often hear about which is that is that biases do occur physicians and health care providers are part of society and in part of society we are accustomed from time to time to having biases we often refer to these biases as implicit as in that they’re that we’re unconscious of them sometimes and then our being unconscious of them we may in fact and in fact this is documented that persons of color are often under treated which then raises the possibility for death now all of this matters in during our current pandemic because we want persons for example to be tested early enough that that they cannot expose someone else so one of the things that we that we know that occurred early in the pandemic here in michigan was that only certain neighborhoods had access only persons who had symptoms had access to testing in both of those cases and both of those cases then that allowed the virus to spread into communities that didn’t have those kinds of resources assigned to them as of yet so again there was over overexposure in communities that really needed it most and then finally just the reminder that yes we have these biases yes they can be can be unconscious okay and in doing so we are actually identifying the fact that we have potential dangers associated with entire swaths of persons and that’s what we want you to understand from this last bullet point that that isms all of the isms racism sexism they actually occur in medicine as they do in other parts

of society so i want to dip back into history then so now that we have this fuller picture when i dip back into history just momentarily quick quickly run down this list so we talked about enslaved men but we also had women i’ll talk a little bit more about that in just a moment we have the book that i mentioned earlier medical apartheid these are all all of these things are documented in our history and some of you may here on campus may have read last year the immortal life of henrietta lacks we’ll talk very briefly about her story as well and on this list we have the very famous story of the united states public health service study of untreated syphilis in the negro male which we often refer to as tuskegee or tuskegee syphilis experiments and for those of you who had me in medical ethics you know we go into depth in this or for those of you who plan to have me in medical ethics so very quickly um there’s a reason why persons of color may be dubious about participating in medical research we’ve talked a little bit about the history i want to give you a couple more examples and in giving this couple of examples where i want us to focus this time is yes that’s the history that influence the experience or the perspective but it also helps us to understand why it’s important that we then find ways to include all of these communities that made with reason based on history and experience exclude themselves ethically we have the experience of slave women who were also lent for for the purpose of developing gynecological surgical techniques this is a very famous story becoming very famous where the person who we refer to as the father of gynecology is known to have had let slave women available to him in order to perfect the gynecological techniques that were important but what’s important about this ethically is that these enslaved women were used for the refinement so they in fact looking at looking at this picture here they in fact bore the burdens of the gynecological experimentation but it was white women who ultimately received the benefit and this is what we’re talking about when we’re talking about the lack of ethics or ethical ethical problems we cannot have some groups bear the burdens and other groups bear the benefits and this is where then the issue of distrust is vital because we’re interconnected in this sense very briefly i’ll just give this uh just get look uh hold out this particular um bullet point for weekend women during the late 1950s and 1960s same kind of issue that birth control pills very early in development were used in clinical trials often the women were volunteering however thus they bore the burden of the side effects in these early early trials and then very quickly grave robbing in order to understand medicine physicians needed bodies on which to train and there was very it’s very well documented again that grave rubbing and black cemeteries occurred and the bodies were then so the cadavers were sold to northern amer uh medical schools for training very quickly again the story of henrietta lacks here we had a lacks poor woman living in maryland when she went to johns hopkins for care she understood that something was wrong with her body she ended up at johns hopkins where they provided charity care do we would think that this was good but in providing charity care one of the perspectives of some of the physicians was that in exchange for this care that persons who were at hopkins in charity care would then be accessible to researchers for

whatever was needed with their bodies and in this particular case tissues were taken from henrietta lacks it was learned later that her cells would continue to duplicate and in the duplication these cells were then used for medical discoveries and have been and continue to be used for medical discoveries for decades now she died in the 1950s and yet her family line continues often to live without compensation and without health insurance in some cases it certainly was true at the time of the writing of the text so let’s just say that instead of all of these negative stories that we’ve had so far in the history these real stories right that there was in fact let’s just suggest that if we could think about health care and medical research in a different way if we could think about african americans and other people of color as being full participants or full lord participants how might then that impact us in as we try to move forward during this age of covet 19 so i’d like to offer some some something to think about hemorrhagic cells were needed to be mass produced as we as we began to understand their value to medical science they needed to be mass produced and in that need for mass production we actually have documentation that tuskegee university tuskegee university we now call it tuskegee university a historically black university is in fact the place where gila sales were first mass-produced so if we were able to think about tuskegee in terms of the science that it contributes we will not only be having a conversation about tuskegee as a place where victimhood occurred and this is a reminder that we in fact do have have both of these histories with which we must wrestle on this particular slide i want to point out a couple of things i want to point out that here recruitment and treatment of the men who were untreated right occurred through black institutions hold that out for a second the person who was able to keep up with all of these men over the course of 40 years tuskegee the this study went on for 40 years was a a trusted member of the community uh black nurse okay but we also want to point out that one of the persons who became a truth taylor a truth teller who worked for the cdc and understood or became aware of the experimentation the unethical experimentation that went on was dr bill jenkins he’s an epidemiologist he died just in the last couple of years and he was one of the first people on the inside of the of the cdc who brought awareness to its problems so with this slide we have a fuller picture of african-american participation we have african-americans as researchers we have african-americans as patients or subjects really in this case because part of the problem that we must understand is that the men were participating because they were not told the truth they did not know that they were participating in an experiment so once again we’re able to see a fuller picture but we’re also able to see some of the mechanisms that unfortunately have been used as a mechanism for sustaining distrust for developing and sustaining distrust over the course of a prob probably a hundred and twenty years have we formerly formed for molly been studying health disparity medical racism especially as it relates to medical research 120 years but recall that earlier slide this idea of race

has been around for 400 years so these are two pieces of the puzzle that we are that we are struggling with and when i say struggle we have this idea of vulnerable persons but we also have this idea that exploitation can occur in medical racism or in medical research and in this idea of exploitation what we understand think back to john brown and dr hamilton think back to henrietta lacks in experimentation what we want to avoid is exploitation everyone wants to avoid exploitation people of color whites everyone no one wants to be identified as a guinea pig or in the late in our formal language vulnerable persons so the question then becomes is it possible for us to move forward given this history of harms that we’ve been discussing very quickly i want to give you the overview for those of you who haven’t taken medical ethics yet give you overview of where we focus autonomy is the idea in in bioethical reasoning that my body is my own and i get to decide whether i participate in medical research beneficence medical research should never be for anything other than a specific purpose with medical value non-maleficence we don’t want medical research to harm anyone at least not intentionally and justice that we want to be sure that medical research is fair think back to when i described about testing and where it was available and who was available too we want fairness in medical research that the risks of medical research ought not be assigned to one group and that the benefits be assigned to another group so morally in order to do that we want to avoid exploit exploitation that risk benefit sharing right we want to treat the most in need as resources are available think back to the testing example and then we get in a little bit deeper which we won’t do tonight this is where i want you to begin to think of think with your friends and family about our our future moving forward when we say most in need that’s a tricky concept do we mean first responders do we mean the sickest patients do we mean populations that are most at risk do we mean first come first serve whoever gets to the hospital first gets the treatment first um very quickly um we have yes we have african americans participate in medical research want to be clear because remember think back to harriet washington she said and here’s her quote again but focus on a slightly different part of it than before this time we’re focused on the part that says aversion aversion to clinical trials is at peril and being apparel what we want to do again is follow those ethical ideas that we just talked about on the previous slide right but one of the things that we we have to understand is that it isn’t just a matter of participating in the clinical trials it’s a matter then of being able to follow through with the treatments um or vaccinations that come out of clinical trials and one of the things that we know is that african americans actually um end up being in trials that don’t require consent more often so we we want to be sure that we understand that and and just very quickly we know that we have an anti-vaxx community um persons who for whatever reasons are uh are concerned about participating and um receiving vaccinations and at this point we do know that there’s some concern about that that approximately 70 of whites have have suggested that when a vaccine becomes available that they will in fact participate but about 63 percent of black adults have said that so we have some gap there as well so that was the worst case scenario that

we have persons who are participating um without without trust or who won’t participate because they don’t trust but here we also have a best case scenario on this slide you see me but of course you also see kim kim is a best case scenario kim is is an african-american who did in fact participate in clinical trials we we know that because kim kim is one of my oldest friends i met her when we were in elementary school this is us at the university of cincinnati homecoming several years ago and um kim being a good friend one of those sister friends all of us have friends like this that you don’t talk to them for a few years but you when you get together you talk talk for hours upon hours my last conversation with kim was june 23rd 2018. i went to visit her at her home in florida and uh kim and i got to talk in catching up and in our catching up um she lent to me a couple of blue folders we were talking about some of my research and she let me a couple of blue folders she said i’ll give you these blue photos if it will help your research what was in those blue folders were two clinical trials that kim had been trying to get into so she had given her consent and she was just trying to she was just waiting to find out if she would be selected unfortunately kim had metastatic breast cancer and died two weeks later but i never forgot what she said to me what she said to me was if it will help here are these two blue voters and with me this evening i have those two blue folders those folders have kept me to doing this work because a story like kim’s is a story that we also have to lift up kim’s story is very simply this yes she had metastatic basket breast cancer but she also wanted desperately to participate in clinical trials but we should understand something very specific and the research shows this that kim was an educated woman she was a healthcare exec healthcare ex healthcare insurance executive and she had a great great resources and sufficient income including a beautiful five bedroom house she fits the profile of people who very typically participate in cancer clinical trials they have options and that’s what we want to make sure that we don’t overlook we don’t want to overlook that people are willing to participate the research shows this as well african americans are willing to participate but we must have transparency and we must realize that it is important the nih understands this that it is vital that we have persons across racial lines participating in order for us to defeat covet so quick takeaways if you’re interested in participating in medical research during our current crisis one of the things that you should do is make sure that you’re having a conversation with your family and your loved ones before you get into to crisis make sure that you explain that you’re willing to participate if in fact that’s the case for you remember research itself is is not actually to try to cure you right now but it is because you’re participating because you want there to be future future possibilities for others we want to make sure that you’re participating in phase three cloud trials by the time it gets to phase three that’s their more therapeutic some people will be willing to participate earlier and to be sure that you understand that consent is your right and that you can in fact uh end participation at your leisure at any time you’re feeling uncomfortable and then finally i want to leave this discussion question with you what if you have now understood the history of people of color and african americans

in medical research and medicine what if now then you yourself want to think about how do we move forward in developing a a system that is more inclusive commercial break be sure to take medical ethics any of my courses are available right and finally here are some recesses for you thank you so much for your time and attention and i’m happy for questions okay thank you so much dr laws for that thought provoking presentation and so with the conclusion of your remarks we will now move into the question and answer period and i just want to remind everyone that on the bottom of your screen there is a q a button that allows you to submit questions live to us we’ll try to get to as many questions as we can some questions have already been submitted so our first question dr laws do they still have health care trials without consent in any state in the united states unfortunately um there are trials without consent and that was the slide that i went through very quickly that uh there are trials efic was the track was the um if um gosh i can’t think of the letters right now but it’s uh uh without informed consent and it very often happens in emergency situations like the pandemic that we that we are experiencing right now and there is over exposure for persons of color in those in those trials so yes that’s why you want to be you want to have the conversation now before you’re in a crisis okay thank you our next question so in your presentation you observe that the idea of race is hundreds of years old and that academics have been studying health differences between blacks and whites for over a century in addition to greater participation in clinical research by african americans and other people of color what is something else that might contribute to our understanding really you know so we know that this has been studied for hundreds of years this is how i’m reading this question right or we know it’s existed for hundreds of years but only been studied for about a hundred years so in addition to greater uh participation in clinical research by people of color and other african americans what other things can we think about in this context that might contribute to our understanding overall thank you one of the things that we should understand is that we are actually fortunate here in michigan in that we actually collect race because we are not actually clear for across the country that race uh is collected so we don’t know so that leaves us then we don’t know what we don’t know but because we know in the state of michigan we are actually able then to set up a task force to identify and to identify the reasons for uh these gaps and that we could then go about attempting to solve it so one so that’s one of the things that we should understand and we should also understand that that we work through institutions i mentioned this very clear very quickly that we work through institutions through community institutions so in our community we know that if we want to work with the arab american community we we go to access right if we know that in in uh in the african american community we go to churches right but we should also understand that the researchers in tuskegee also understood that right so you should be so so we as researchers have to be thinking about how do we build rapport right race race is can be distrustful but we have to be thinking about how do we build rapport before we actually need the community fantastic thank you next question if i want to participate in clinical trials but so far i’m healthy without any health problems do you recommend this and if so how do i try to find studies to participate in yes so actually there are um on normally there is clinicaltrials.gov but but for covid there actually are uh clinical trial um uh websites in and of itself just for covet so yes you can participate as a healthy person in healthy healthy persons we especially want to participate in these earlier trials the phase one and phase two where it’s first

in humans um phase three is i always emphasize phase three especially for persons who perhaps are are wanna want to help but maybe a little more distrustful but we have actually but we know for example these announcements that we’re getting now are from from trials that are for health that are from healthy participants that the vaccine trials that we hear about for example yesterday at in the oxford trials these are typically healthy participants so clinicaltrials.gov and a coronavirus look for coronavirus and cdc also has lots of information about how to find a trial excellent thank you so two questions came in that really dovetail nicely together so the first is can you talk a little bit about how those going in the medical field can try to defeat their own implicit bias and the dovetail with that i would add and can you please discuss the benefits and limitations of implicit bias training so first i’ve provided some resources but we have as a campus we’re very fortunate that last year we talked we had for our community read the immortal life of henrietta lacks i mentioned medical part-time reading is always an excellent way to get a fuller explanation in this year i believe it’s already been announced that we’re going to be for community we going to be reading how to be an anti-racist right so this helps us to understand these systems remember that slide said that all of these um work through systems we’re talking about systems here we’re not talking about individuals now when we’re talking about individuals yes we are talking about implicit bias but we should understand a couple things about implicit bias first of all it works in it it works worst in stressful situations right that’s when it comes out most and it’s most vehemently but we should understand um for example let me just say let me say if we if in the best case scenario that question came from a student right and so coming from a student we have african-american studies we have women and gender studies we have arab american studies we must educate ourselves we cannot only live on our own experience so reading of yes experiencing getting to know but finally implicit bias works because often there’s some kind of fear at play okay so the stress and there’s fear we have to be aware of ourselves and that is not to say that the implicit bias goes away but we can train ourselves to not respond to whatever is bringing up that that bias excellent thank you so do you know that as of yet has coveted 19 research changed once the disparate impact was recognized by the medical community or the research community this is actually one of the things that we’re again because we’re not collecting race everywhere we’re actually not sure what we are identifying we are beginning to identify are some of the other problems that go along though with distrust for example this the uh my mentioning of uh um uh anti-vaxx anti-vaccination this occurs in all communities it occurs in african-american communities and there was a story just a story just maybe three or four days ago in washington post so what we are beginning to do is to identify some of the other problems even before we have the data because the problems have pre-existed coronavirus so now we’re beginning to understand some of the other problems that exist in that gap and in our implicit bias so the next question is about um the population of folks that are in prison so and so much research is done on prisoners who are not truly free to accept and who are disproportionately black men and women doesn’t that automatically create an exploitative situation yes it can yes it absolutely can yeah um prisoners um even though i didn’t i didn’t uh focus on that that is another part of the horrendous history right prisoners have it is well known that prisoners participate in research because they believe they might get some special privileges so yes that was in fact exploitative and no we cannot presume

by any stretch that that exploitative example no longer exists we must presume that all of the things in history that have been exploitative continue to exist which means that we have to then educate ourselves so that we can be vigilant to identify it so could you describe how this implicit bias might appear in veterinary practice so let’s just so the first example that i’m not a pet owner but the first thing that comes to mind is let’s just say that a um that a uh a pet owner brings in his or her pet a dog let’s just say that the dog has a broken leg and the owner says to the dog or says to the veterinarian that the dog was hit by a car the veterinarian looks in disbelief at the owner and accuses the owner of misuse of that animal okay this is implicit bias at work it’s implicit bias at work because the pr there because the veterinarian is is dismissing what the owner has said and and presuming that there’s been some kind of wrong behavior this is this is quite typical both in human medicine as well as as other forms of medicine okay thank you our next question i work closely with ophthalmologists where glaucoma diagnoses are common but many physicians are taught to look for glaucoma as a vision issue in african americans because it has been shown to have a higher prevalence in the african-american community at what point are assumptions of certain medical illnesses racism and at what point are they research topics that require testing that one race may receive over another this is this is a really good question right because we do not have to presume um we do not have to presume that something nefarious is at play um so i want to speak to that using an example that i use in class all the time the example that i use in class all the time is that i go back to to the to the tuskegee experiment because we’re also familiar with with that if you’re not familiar with it just send me an email and i’ll i’ll explain i’ll explain it um but in that i ask students is it automatically problematic that we design a treatment for a group that has a particular problem the answer of course is no if there’s an intervention a public health intervention needed for a particular group as is described in the question what’s ethical is to is to address that problem that is what is ethical what is unethical is to assign nefarious reasons to the to the um to the disease at hand or to presume that there’s something biologically inferior about the group that continues to have that has a greater incidence that’s what that’s the difference between medical racism versus public health treatment right you want to provide care you don’t need we don’t need to moralize this is a as a religious study scholar we don’t have to moralize disease in order to treat it thank you so a couple of questions have come in with sort of similar themes so what do people of color do or what should they do when they feel like they are encountering some version of implicit bias um in the medical field or otherwise so here i um anecdotally i’ll talk about cobra here anecdotally we are beginning to hear that african americans are speaking up more in their physicians visits we there’s plenty of data to show that um oftentimes uh caregivers and implicit bias speak to um persons of color and women um rather than ask questions of them but in order to be a good patient and actually um health and human services the federal agency health and human services i believe it is has

a how-to guide for how to be a good patient right come with your questions prepare for your visit know what you want to know and don’t leave until you find out what you want to know so there actually are public health guides that help that instruct us about how to be a good patient speaking up even in the concern even having the concern that you will be treated not not be treated that’s because that’s the issue at hand is a power dynamic but speaking up or speaking to someone else who can speak on one’s behalf in in hospital for example there’s a patient advocate or a social worker who you might speak to who may speak to that physician on on the patient’s behalf so there are other professionals on the health care team who are willing to help patients with that so this question is about participation in studies related to the pandemic so are there current studies that you’re familiar with that you would encourage um folks watching this and participating in this course uh to get involved with um not specifically um i know there have been some studies that hair henry ford um i did not bring with me a list uh sorry this evening um but for certain there there is medicine um being created here in our area and uh if that person is not in our area they’re they’re happening around the country so again look at clinicaltrial.gov or coronavirus um playlist.org but and check the cdc website for specific studies i’m sorry i didn’t bring a specific study in mind so what protections are there for participants in a clinical research study another great question okay so i i think is my screen still myself yes okay great so i’m gonna go back to i’ll go back to this uh this one because here in this slide what i wanted to do was to talk a little bit about protections right so um when i talked here about the these are things that tell us whether things are ethical these are just an overview that gives us a guide about ethics of medical research but here here is where i want to do my own decision making i want to think about whether or not i’m ready to participate and i’m going to have that conversation with my loved ones i want to ask myself am i why why am i doing this do i want to help am i seeking treatment and understand the difference between treatment and and research research can provide benefit but it doesn’t always and that really isn’t its design um when i’m making decisions about what’s moral for me looking back again to that the other set of principles autonomy and justice how to where do i get my my sense of moral decision making is it out of my intellect is it out of my religion which is true for many african-americans is it out of some other kinds of beliefs is it out of me i i believe i have the will to do this is it am i doing this because i’m a lover of justice am i doing this because i think it might help me right so i think i so i want to gain access to to novel treatments because remember what washington said way back in one of those earlier slides she said that we can ill afford to not have everyone participating and then what level of risk am i willing to take am i willing to going back to the question from the person who asked about um uh about being a healthy person am i healthy so i’m willing to risk phase one where this drug has never been used in a human before am i willing to risk phase two where i’m willing to risk what what what kinds of side effects may in fact be induced or am i looking for something that may be more therapeutic and always remember that i’m a volunteer and because i’m a volunteer i may withdraw my consent at any time that is one’s right as a participant i may withdraw my consent at any time the researcher won’t be happy that’s not your problem

the researcher that’s the researcher’s problem okay so that brings me to an interesting question which is is there any type of punishment for trials that are done without consent yes the the punishment can be to the to the individual researcher but the punishment can also be to that researchers institution and uh we have had well named or very famous institutions lose access to medical research dollars through that particular researcher to the tune of millions of dollars so it isn’t just a researchers not risking only their own research they’re risking the the research of other persons in their institution we would not want the entire university of michigan system to be without access to federal research dollars and we have to take our clinical our our our testing we have to make sure that we’re certified in our um in our research capabilities every few years and in fact i think a new one is coming out soon so this is our last question for the evening as you stated hela cells were taken without consent and should not have been done so we’re thinking about last year’s commentary the immortal life of henrietta lacks however what would you say to people who say that although it should never have happened her cells brought in a new era of change and helped to battle cancer and other diseases and saved lives that would otherwise have been lost we’re talking about we’re talking about a science as though we can divorce it from its ethics we never want to divorce science from its ethics yes we always want to to celebrate discoveries and we want to celebrate those discoveries that have been particularly helpful right because they’ve been helpful for everyone but we cannot overlook destruction or things that were done unethically because they come at a cost right this whole conversation has included i’ve included the word distrust and mistrust many times so when we’re thinking about yes we could get something beneficial it is true but those benefits come at the risk of medicine as an enterprise and we and especially want to go back to covet especially during this time when we are reliant upon one another we’re reliant on someone to wear their mask right we’re reliant we’re we are showing we’re learning not showing perhaps for some learning for others that we are interconnected and we want to do the same thing with this idea of medical discovery and the ethics of medical discovery we don’t want to divorce the two okay so that concludes the formal part of tonight’s presentation and question and answer i’d now like to just spend a quick moment going over some brief housekeeping details but before we do that i’d like to say a thank you to dr laws for an amazing presentation this evening so let’s talk a little bit about things you need to know about to participate in our series the link that you use to access tonight’s presentation will be the link that you use each and every week to access our course all presentations are being recorded so tonight’s presentation will be available probably tomorrow on the pandemics perspectives website students who are enrolled for this course for a credit please know that you should already have access to the canvas site the course is listed as libs 290. if you do not see the canvas site by tomorrow and you’ve signed up for the course with credit please email pandemic perspectives at umich.edu as soon as possible so we can identify what the issue is and get it resolved in the canvas site students taking this for credit will find a five question quiz that quiz should be live now please be sure to take the quiz no later than next monday 7 27 at 11 59 pm as a reminder to earn the credit you must participate in the sessions complete the quizzes and then complete the reflection assignment which will begin at the end of our six weeks together lastly i just want to invite all of you who

are here this evening to be sure to join us next week when we have doctors paul drouse and dr jp jacob napiarowski here it’s going to be a very exciting presentation about the history of a pandemic of cholera in london so please do join us it has been my pleasure to be here with you this evening and i look forward to seeing you next week good night