TOWN HALL #6 PROF LISA IKEMOTO ON BIOETHICS, HEALTH CARE LAW, PUBLIC HEALTH LAW AND POLICY
Professor Lisa Ikemoto has a B.A. in English, American studies concentration and history from UCLA, and a Juris Doctor from UC Davis Law School. She also has a Master of Law degree from Columbia University's School of Law, and she is a member of the faculty here in the Law School at UC Davis. She's a world-renowned expert in reproductive and genetic technology issues and in healthcare disparities which is what she is discussing in today’s town hall.
*Introduction of Prof. Ikemoto above was done by Dr. Mark Winey, the Dean of UC Davis College of Biological Sciences.
Prof. Ikemoto’s Town Hall video with English and Spanish subtitles can be found here.
In addition, a summary of this Town Hall, including student questions, can be found on this Twitter thread curated by undergraduate researcher Daniel Erenstein.
Transcript of Prof Lisa Ikemoto’s talk
Thank you, and thanks everyone for showing up… As Mark said, I am a legal scholar. I understand that I am the first non-biomedical speaker that you've had for this course so don't hold me accountable for anything I say or misstate about the science please. I work largely in healthcare disparities, bioethics, and reproductive rights and justice, and some of my comments will come from that. I'm going to start off the conversation talking about the way that COVID-19 is sort of unmasking the healthcare disparities and the role of discrimination in our healthcare system in the United States, and I'm going to focus on the domestic setting, if you will.
I want to start by saying that, you know, I see this more as a conversation rather than a Q&A, so these are just sort of get the conversation rolling, and I hope that everybody will join in with their own thoughts and comments, not just questions. I hope to really engage you this afternoon.
This is by an artist who does a lot of work showing the way that race, gender, other sort of stratifications in society interact with other issues including healthcare. So this image has become fairly widely used in terms of the social distancing measures that we're taking now.
So you know, one of the things is that it's become clear on the one hand that coronavirus affects everyone, right? Either directly by infecting them or otherwise by the measures that we have to take to protect ourselves and to protect our neighbors and our family and our friends and the people in our communities whom we don't know. And I think if you look at this image, right, that's one way or one lens that you bring to this picture is that it affect us.
We are all in this together, right? And that's one of the best public health messages. And certainly it's become clear in the news that anybody can be affected irregardless of their fame, their wealth, or their titles. We've got Tom Hanks and Prince, is it Charles? Prince Charles of the UK here on this slide. They've all tested positive for coronavirus, but at the same time it's been very clear that the impacts of the virus in the worst ways, right, have racially disparate affects and different effects with respect to preexisting conditions and disabilities as well so just a sort of discussion prompts or reminders if you will. I've got two slides showing some data. So this is from the "L.A. Times."
Some data showing that in four states that they used to illustrate this point infection rates are widespread but the mortality rates are significantly disparate. And so the dark blue bands on this slide are representing the number of black people in these four states who have died and the light blue represents the number of people or percentage of people who are white who have died in these four states. And then last week UCSF published a study.
They tested just over 4,000 people in the Mission District of San Francisco and this one little paragraph shows you that 1.4% of the people that they tested positive for COIVD. Just over half of those people were asymptomatic, but of those who were infected who tested positive, they were overwhelmingly Hispanic or Latinx. It also says that the majority of those who tested positive reported having been financially affected by economic fallout of the pandemic, and only 10% reported being able to work from home. And so that sort of shows some of the sort of non-medical factors that come into play, so I want to spend a couple more minutes talking about how race structures health in the United States. So I'm going to start talking, giving you just a little bit of data, other people's data, not my own. I don't do direct data work. I just talk about other people's. It talks about inequality in healthcare access and its effects in the United States. And then I'll talk about inequality in other aspects of our lives in the United States and how that also affects what's happening with COVID-19 right now.
So this first slide shows, for example, that we have this, it's not shown necessarily in this slide, but the background is that, I think as most people know, we have this sort of hodgepodge ad-hoc healthcare system in the United States. It's more or less it's a patchwork system that's been put together primarily from the 1930s to the present time so in less than a decade we've ended up with a system that really makes no sense, if you will. So the green line that runs horizontally up and down across this particular slide is the percentage of people without health insurance so that's the rate of uninsured in the United States. And part of what it shows is that you get this peak number here and that number peaked just before the Affordable Care Act was implemented in 2014. And then once the Affordable Care Act was implemented the number of uninsured in the United States drops pretty dramatically for a couple of years. So you see the number, the low number here in 2015 and again in 2016, but over the next couple of years and into 2019, at least based on the data that's come in so far and the data that we have from 2019 is not yet complete, the numbers of people who are uninsured has been steadily increasing again. And so that's not a coincidence. It has to do with particular healthcare policy decisions that have been made and legal decisions that have been made. And so one of the reason I chose this slide is because you can see some of the policy decisions and how they've affected the rate of uninsured over time. And so it correlates with dips or increases in the line here. This also shows that the rate or the sort of disease burden that we have in the United States represents racial segregation or various types of racial segregation that we have in the United States. And so over here you have the different sort of racial categories that we use in the United States.
And the first column here is with respect to asthma. This column here represents people who've been diagnosed with diabetes. And the third column here is people who've been diagnosed with having had a heart attack or who have heart disease, coronary disease. This slide's important for purposes of our discussion because all three of those put those groups into at-risk, significant risk of having more serious experiences of coronavirus, so higher mortality rates and certainly just a tougher time for those who do recover, if you will, and you can see that there are racial disparities even after 2014, so after the Affordable Care Act has been implemented. And then the other thing that I mentioned very briefly that I want to use this slide to illustrate is this.
It's not just disparities in the healthcare system but what you see in the healthcare system shows that racial disparities, class disparities, gender disparities, other kinds of forms of discrimination as they've been implemented and shape other sectors of our life also intersect and affect sort of who gets COVID-19 and who lives or dies from COVID-19. So this shows the way that our labor sectors have been framed, and these are some of the essential occupations. So people who are expected still to go to work even though as you can see over here the median hourly wage for some of those sectors is low. Right, those are people who, maybe because they are essential cannot call in sick to work or maybe because their hourly wage is very low can't afford to call in sick to work. It also shows that they are at high risk because they work in close proximity to others, so this third column over here shows the extent to which people in those different categories work in close proximity to others including those, right, who are infected with coronavirus. So many of these essential work areas are disproportionately women, People of Color, low-income people, and so you can think about, who are bus drivers, who are the people who pick up the recycled materials, the waste in our cities and our counties? Who are the line workers for our electrical and telecommunications systems? Who are the nurses, who works in the grocery stores? And other kinds of retail centers, right, that have been open so those are disproportionately, as I said, represented of People of Color. All right, and then the other thing I'm just gonna flag and put this out for discussion and then we can just open it up is that, you know, pretty early on in what came to be recognized as the outbreak in the United States you get words that reflect eugenic thinking and also racist thinking. And so the anti-Asian racism certainly ramped up across the United States. You see that even in California, and we think of ourselves as better about race in California than other states, and obviously that's not perfectly true. You have here the statement by a Lieutenant governor, the Texas Lieutenant Governor Dan Patrick a few weeks ago who suggested that grandparents would or should be willing to sacrifice themselves in order to keep the economy open for the sake of their grandchildren, the next generation. We had talk about immunity passports or immunity ID cards, and then certainly the feeling by many people with preexisting conditions or disabilities who feel like maybe they're disposable or they're being thought of as disposable or more disposable than they were before this outbreak became obvious. So again, I just sort of want to put that out to think about how, it's not just the structures that I talked about but about how individual and cultural forms of discrimination are interacting with what's happening now. And I think, excuse me. The other thing, just another point of conversation maybe or another thread of conversation is that I think part of what's shaping the conversation, and now that there's been a lot of push to open up and list some of the social distancing measures especially excuse me, the lifting of the shelter at home measures is that, you know, we've been talking about these numbers for weeks now and you start getting numb to these. And there's a sort of risk benefit analysis that's going on and really shaping the conversation. And in bioethics and in public health, and certainly in economics literature as well one thing that happens, one way that enables us to sort of overlook the sort of value, a sort of noneconomic value, intrinsic value of human life is that we think of people as statistics or we begin to think of people as statistics, and particular groups more than others as statistics. So here's a definition of a statistical life. In bioethics literature sort of one way or one concept that's put up in opposition to that is identified lives. So maybe one way that you've seen that play out is in a story where somebody needs to be rescued. And so you get a little bit of information about that person, you get a photo of that person and their family members pleading for help, right, rescuing that person and tons of resources, right, are put in by individuals through GoFundMe efforts or the local government or even the national government willing to come in and rescue, people volunteering to go in and rescue that person or that small group of people. Those are identified lives, right. We've come to think of them as real people, right. But in the meantime in the background of these conversations you have a lot of other people who were similarly at risk and yet we don't allocate our resources in a similar way because they remain just these numbers. So one other thing, the last that I want to throw out before I just sort of open this up for broader conversation is that, think about the ways that these different forms of discrimination inform our understanding of who these statistical lives are and which are more important, which are more valuable in economic terms and which are less valuable. All right, that's it.
Questions from students
Q: I was particularly interested in is, in reading your, I guess it was a review that you wrote on "BioPrivilege" and that idea. And I think that feels very relevant to me when our students are thinking about making public service announcements, trying to address problems in society and that notion of, that information is powerful. Could you help us sort of think about that idea a little bit?
Sure, that comes from an essay I wrote a few years ago. It was sort of a spin on a concept of privilege that a number of scholars in feminist theory and critical race theory have used. So certainly, in diversity education at UC Davis we've heard about the concept of racial privilege or white privilege, and this was sort of thinking about the different ways that our understanding of who we are biologically is shaped by these kinds of social norms including racism and sexism. So going back just maybe 20 years, right, you think about how the standard medical textbook depicted sort of the typical body and all the images that were used at that time were those of white males. And so women's bodies, for example, then were depicted as, in a sense, only to the extent that they were different. So when female bodies were put in the medical textbooks or bodies designated as female bodies were put into the textbook, right, only the reproductive systems were shown, right, not the whole body, right. And similarly, a lot of the data that's been collected over the years about healthcare status is based on studies that were done on white men an average of 170 pounds. And that's how we get our standard dosage for drugs and so on, right, which means if we don't sort of think about how diverse the population is then those are more likely to suffer the harms of that kind of normative thinking, right, are those who don't fit that profile. So in this context, I mean, it might play out, for example, if you think about the immunity passports that have been suggested both in the United States and outside the United States. Well, those who've acquired immunity assuming that we can even find a biomarker for immunity, right, so let's assume that you can and you can get an immunity passport, that's gonna depend on a lot of things, right? It depends on survival. And survival's gonna depend on access to really good healthcare. And that's determined by all the different forms of discrimination that I just mentioned and probably several more that I haven't mentioned. So access to those kinds of resources as well. It might also just depend on who can get access to the passports themselves, and that also might take connections and resources and some sort of privilege, so that's one example.
Q: I think that's helpful. Some of what I was thinking about especially as the students are preparing their public service announcement is the idea of information itself and that seems to me, at least from my reading, to be not very equal at all. And so there are clearly anecdotal examples in this pandemic where some people were being tested right away and other groups didn't even get access to the test or know about the test. So is that part of this bioprivilege?
Yeah, who can get tested in a time of shortage, you think about even, I've had a couple people tell me what it would take to get tested and part of which, you have to have the time, right, and the ability to wait for hours and go through the preliminary tests, the screening tests they use that sort of gives you the permission to get tested for coronavirus in the first place. And so that means that you have to have other kinds of resources as well, so who can and can't get tested.
Q: And that's a nice point for our students to think about as we've been talking about and we will be talking about the technology underlying tests as it gets better and quicker, for example, that might help equalize some of these disparities. So there's a couple of questions already from students. So one of the students asks, what would be the first steps to fixing the sort of patchwork healthcare systems? How can different levels of society, politicians, communities, individuals contribute to the betterment of this issue? Where do we start?
Yeah, that's a great question. So that's been the subject of debate in national politics for decades but probably heightened in the 21st century, so certainly the lead-up to 2010 when the Affordable Care Act, that was a period of time in which this was in big debate. And certainly during this past year and leading up until November you've heard all different proposals for increasing access to healthcare, to quality healthcare as well. So in part, you know, if you really wanted greater access you could have by whatever financial system available have more government funding in there. So that could be in the form of a single-payer system or just a public option in the healthcare markets. There's no one path to that, but partly what's been happening in the past couple of years is that there have been reductions in access so some states, more heavily in the South, have refused to uptake the Medicaid Expansion that the Affordable Care Act has enabled. Right now there's a challenge to the Affordable Care Act as a whole, a case called Texas versus the U.S. that's going to be heard by the Supreme Court during the fall. If the challengers prevail in that case then the Affordable Care Act will go away. And so those pre-2014 numbers that I showed you on that slide with the green line, right, that could drop dramatically as a result of that. I don't know if that answers the question.
Q: What can we do as individuals? These are all biology majors and they all have voices and they're learning how to talk about this problem as a biologist, but how as a bioethicist would you begin to make the case for fixing that patchwork? I mean, maybe it comes down to that economic. I mean, I don't like thinking about individual lives that way, but maybe we need to be a little bit more conversant in how we talk about the need for more equality in healthcare. So how would a bioethicist frame that argument?
I'm going to answer in two parts. First, I'm going to answer or make a point that's not directly responsive but I think is important and that is that I think as, for those of you, I assume most of you are on your way to being established scientists, that's really important. You're going to have in a sense a great voice in any kind of discussion about science and health policy. So one thing that happens in our society is that not only are certain categories of people or populations privileged or not privileged, but also certain types of knowledge are privileged, and science knowledge is often privileged, especially in conversations about health and so you can use your voice, right, as a scientist or somebody with science training to speak on these issues including the social and cultural implications as well. So I think it's important to keep that in mind and to stay educated in these other policy issues, you can use that. And then I think the other part of it is that, I think we can all push back a little bit on the sort of cost-benefit framing of these issues. I mean, bioethics uses risk benefit, cost benefit weighing as well, but it doesn't necessarily mean that the only test you apply is a risk benefit or a cost benefit test. It can certainly be a factor. Another way to sort of challenge that kind of thinking is to think about, what do we count as a risk and what do we count as a cost? So when you want to expand healthcare everybody says, well that's gonna be really expensive, and it will be, right but you're saving costs down the line. And certainly the Congressional Budget Office issued a report on that, and they've issued several reports on that in the past few years since 2010 when the Affordable Care Act was passed. You get these long-term savings so we can take account of those. But you also think about the other kinds of values, right? And the other kinds of costs. So there are costs in lost lives and the value of those lives and the values in certainly the people, right, who are being protected by expanding access to healthcare. But also I think in terms of social values and democratic values, right, how it is in a society that we value people and how are we going to express that?
Host- Right, so I think that's a really important idea, at least to me, is being able to think about values not just in dollar terms, although we do have a budget in the country and so I think those are valuable arguments to be able to make, but in expressing our own sense of what is valuable. There was a piece a while back now. I don't know if anyone besides me listens to Radiolab, but it was a podcast on the value of I think a day in someone's life. How much would you pay to live an extra day? You know, what would that mean for you? And it was a really interesting, you know, it was very anecdotal, but it was a very interesting conversation on how we value life. And when you change the equation around and you're asking yourself, well, what is the actual value of every day of my life? Then you get a very different answer than when you start talking about, oh, investing billions of dollars in healthcare. So perhaps there's a balance in how we think about that.
Q: What would you encourage students to do to combat sort of the structural racism and xenophobia? Some of the examples that you were giving in your slides.
Prof. Ikemoto- Participate in these conversations on every level, individual conversations with your roommates and friends and strangers, that's part of it. That's the least, right, you can do. And so hold these conversations and to hold them seriously, not just sort of spouting rhetoric, but to just really try to engage, right, and figure out where people are coming from and to really deeply examine the roots of your own assumptions as well. It's really hard work, it's a lifelong process, and it's often a humiliating process, but it's something I think that makes a difference. I think that to the extent that you can in your professional lives, engage with the professional organizations. They're going to be influential. A lot of this conversation is being shaped, for example, but the American Public Health Association, the American Medical Association, the other different types of science professional societies. They have some sway so if that's the place where you exercise your voice then engaging in the wide array of issues, not just sort of at the molecular level literally, right, is a place where you can make a difference. And certainly if you have the right to vote or the opportunity to support expanding the right to vote then those make a difference, too. It often feels like, so you know, the biggest concern is that a lot of young people in the United States don't vote, and I think often, I don't know all the reasons, but it feels like there are millions and millions and millions of people. What difference will my vote make? But it does make a difference, right. And it gives you a stake in what's going on. So there are just three mini examples.
Host- Yeah, that's great, it's a really good point. And I don't know if we do a good job reminding students that there are places where they can have their voices heard and organizations, certainly professional organizations as they go along and maybe even student organizations. I want to throw it out to students out there listening, too. I know you're trying to ask good questions, and your questions are really good, but maybe anecdotally if you have stories about your experience with this kind of xenophobia, racism, disparities in healthcare or things that you've done perhaps over the pandemic to help explain some of these issues to family and friends I think that would be really interesting to share with each other and maybe get a dialogue going along those lines. I'll also point out to students, I know the Public Service Announcement (PSA) is some work but this is it, you're generating your own voice and you're going to be sharing that with the public so it's a really, really important exercise. So I'm sort of justifying my assignment at the moment.
Prof. Ikemoto- Sounds like a great assignment.
Q: How do we confront public healthcare when we're just trying to make a five-minute public service announcement? I think that's some of what we need to practice doing is being able to say in five minutes or maybe less.
Prof. Ikemoto- Yeah, and I think in part is that it is big and complicated so one PSA doesn't have to address everything, you know, how many people in this class have this assignment? If you put all your PSAs together, right, it gets some of that complexity, but every PSA doesn't have to address absolutely every aspect of it.
Host- That's right, and I think that's good advice for students is that you can chunk it down. Pick your target.
Prof. Ikemoto- Yeah, there are going to be parts of this problem and just because you don't address the whole problem doesn't mean you're not being effective. But it is tough when you start to think about it. And maybe that's why younger people get frustrated with voting, it feels so big that sometimes it's hard to feel like your vote would even matter.
Q: How can we address inequities when it comes to digital technologies like contact tracing that's limited to those with access to cellular devices and other resources so I think technology and access to information, this kinda gets back to that same idea, so are there solutions that you've thought about or encountered when it comes to other kinds of medical technology and health technology?
Yeah, certainly I think probably the contact tracing example's a little bit different from the other kind of technologies I've been thinking about. Maybe not entirely, some of the genetic technology uses I've been thinking about have overlapping issues. So if you're thinking about the use of phone apps, for example, for contact tracing, based on what I've heard, I've just listened to a great piece with Danielle Allen and Ezekiel Emanuel. They had a great sort of colloquy between them. And one of the things they talked about was the use of these apps and what's needed for contact tracing before we sort of reopen society. And one of the main points is it's not going to replace manual contact tracing, the starting point is manual contract tracing and then the app or the technology is to sort of supplement that. I think one of the serious concerns about, there's several serious concerns about the use of apps or any other form of electronic or digital technology. Part of it's just access so it assumes that you have a smartphone. But I think the other is that it's a form of surveillance And any form of surveillance, it's hard once it's implemented, we saw this in 9/11, once it's implemented it's hard to roll it back. The other thing is, you can can roll it out for a good purpose, right? Such as fighting COVID-19, but then what kind of protections do we need in place to prevent it being used against some communities more than others to have it being used, and certainly your African American or Latino and certainly some Asian American communities the experience with the use of electronic data, I'm thinking genetic technology, DNA testing for example, it's not a positive experience, right? And it's used disproportionately for prosecution. And so maybe there's good reason to be a little bit suspicious and to be reluctant to download that app on the phone. So I don't know if that's kind of point that you were getting to, but those are some of my thoughts about that.
Host- I think so, it brings up sort of the balance of or temptation to rely on technology to solve a problem. And we have an example seemingly in China where it was used very stringently. And you know, if you look at the data it looks very convincing that they were able to drop--
Host- Infections rates and so just like with 9/11 we're then kinda pushed to this idea that okay, giving up some freedom might be worth it here. And I guess that's an important question for us to struggle with a little bit. Is it really worth it? Is it all that it's cracked up to be? Are there other solutions? Or can we live with a low infection rate in the population and that's just the way we're gonna be? We're gonna go through intermittent shelter in places because we're not gonna give up our privacy or force everyone to be in fever tents or something like that.
Prof. Ikemoto- Yeah, and there might be protections. You can do it in a way so that if the apps keep the information located on the phones so it's decentralized, it's under the direct control of the person who owns the phone, make sure there are legal privacy protections. Make sure there are legal prohibitions on commercializing the data. Make sure there are legal bans on combining that data with other available data so that it can't be misused in other settings. It might be that those kinds of protections make us more comfortable. So part of it's, any time you implement a technology like that, especially a surveillance technology the burden should be on the government and the technology companies to establish trustworthiness.
Host- I can't pass up the opportunity to point out the irony that we're streaming live on Facebook. Maybe they'll cut us off in the middle of this conversation. I don't know. There's a really great question related to this from one of the students and something that I had wondered as well, sort of the balance of using scientific knowledge, what we understand about COVID-19 and then the real-world experiences of the underemployed and those at risk for developing public policy rules.
Q: I mean, we have sort of two poles on us here, things we know we should be doing but then as you pointed out in your slides, there's a large percentage of the population that's particularly vulnerable but needs to go to work. So how do we balance from a policy or a ethical perspective, how do we balance those two poles?
Prof. Ikemoto- Well, it'd be good to have better protections for those workers, I mean, many of those, the labor sectors that I had on that particular slide are in sectors where they have few workplace protections or inadequate workplace protections irregardless of this pandemic so there tend to be high rates of illness and infection of other types and high injury rates in those areas in addition to the low pay. So one is thinking not just about in response to this particular terrible event, right, but it's an opportunity to think about, what do we need to do that's socially responsible, right, for the future?
Host- So the fact is that the science that we understand doesn't have to be different than the real-world experiences that people are going through. We can link them and say, okay, well, we just need to provide the resources necessary so those people have the protection they need to do their jobs and then science and the economic inequities would start to balance a little bit. I think that's what you were saying.
Prof. Ikemoto- Yeah, maybe a little bit.
Host- Right, right. There's a question about, and I don't know these details. I guess a student was asking whether you agree with the value the EPA recommends putting on a life? I didn't know they did that, but the student quoted 7.4 million, I guess dollars, in 2006 and we've been adjusted up to 9.5 million in 2020, cool. So do you agree with that? Do you think it should be larger or smaller? Gosh, that seems like such a hard question.
Prof. Ikemoto- I don't know, I mean, I don't actually know sort of how that number came to be so I guess as a bioethicist my sort of, you know, my response is to ask questions in response 'cause what I'm trying to do is get to what's underlying that number, what were the assumptions built into it? What was it being measured against? So like you said, in terms of my own life that sounds like a really high number, but what's on the other side? I assume that's being used in some sort of cost benefit analysis and so what's being counted against my statistical life and its value?
Host- Right, one thing I love about teaching is I learn things from students so I'm gonna have to go look that up 'cause I have no idea where that came from.
Prof. Ikemoto- Yeah, me, too.
Host- Or what they use it for. It sounds, oh, there's now a link in the chat to the EPA site on the cost benefit analysis so thank you Aidan, I will go learn about that. But I think it's interesting that we go there when we begin to think about the pandemic that we begin to really place some value or think about values on life. And I guess that's because it's constantly being juxtaposed against the economic necessities that we're being told about all the time. I guess, what's your view on that? Is there really a conflict between being safe, healthy, and the economy? I mean, it seems to be that it's always argued in the news that these are two opposing ideas.
Prof. Ikemoto- Yeah, I guess I'm not as convinced. I mean, there is a balancing going on, right? I'm not as convinced that they're always in opposition. One of the things that made me think about that was, you know, the surveys have been showing, the surveys to the public have been showing that even if you open up all the stores and restaurants and amusement centers that the majority of people wouldn't go, they wouldn't feel comfortable going. So the assumption behind the idea that, you know, the economic harms are gonna be so serious that we have to do something now to open up the business world, it seems to assume that that would automatically shift us back to normal, but maybe that's not true. Maybe people want protection and they're gonna end up choosing not to go in order to protect themselves. So maybe the question is, do we allow individuals to make that decision for themselves or should it be government-imposed?
Host- I think one of the things I'll point out to students, and they're probably already aware of this, but the nice thing about what you're telling us is you're doing what we do, we should be doing anyway, questioning information as it's being given to us. Where did it come from, why is it out there? And you know, is this good information? So I think part of what I think we're trying to teach in this class is the ability to discern between good and bad information when it comes to the pandemic and the virus in particular and then being able to reach out and use that same questioning to address these other kinds of issues. We have more questions, let's see.
Q: This one's related to the discrimination, and this is really about language in society I guess. Our fearless leader, our president, do you think his use of the word Chinese virus really exacerbated this kind of discrimination and sort of racist attacks? People latch onto, I'm reading the rest of the question, sorry, or do you think it would have happened anyway? So it's a good question, you know, Is it our leadership that's helping to drive these sentiments or is it embedded in our society or both?
I don't think the anti-Asian and the blaming, right, the racist blaming originated with the White House and with our fearless leader, but I think he ramped it up. And from his perspective it may not have been about sort of blaming Asian Americans or people of Asian descent in the United States. It was about China, right. So he was thinking about geopolitics in that sense and he needs a target to blame somebody on to divert attention, right, from what he has or has not been doing. But there's been a long history, right. If you just narrow it down to public health and fighting infectious disease, there's been a long history in the United States of using public health powers or just the rhetoric of public discourse about disease in really racist and anti-immigrant ways. So one of the earliest immigration restrictions in the United States targeted women from China. So it was in the 19th century in the 1860s more specifically, it was called the Page Law. And it prohibited basically women from China immigrating on the grounds that they were prostitutes and carried syphilis. Other examples is that when there were happening smallpox and bubonic plague outbreaks quarantine laws were brought in in the likes of San Francisco when there was an outbreak in the early 1900s quarantine was imposed on a particular neighborhood and it was drawn around Chinatown. And I guess you could say, well that's where the outbreak was except that it went down one street. I can't remember the name of the street, but it excluded one particular building down that street. So the line was straight except that it jogged around one particular building that was occupied by white people, but the rest of the neighborhood seemed to be Chinese, was included in the quarantine act or the quarantine restriction that was imposed in that time. And certainly anti-immigration restrictions have been imposed or used in the name of public health. So you think about the public health screenings that have taken place in Angel Island and Ellis Island to keep out certain people and who gets sent back and who gets held for a week or two to make sure that they're not gonna infect the Americans. So it's been there, it rears its ugly head periodically, and certainly there are some who feed it more than others.
Q: I think that makes sense, that seems fair. We have a good question from somebody about access to information, so they said they're tuning in from Southern California and they've been seeing a rise of Hispanic communities in terms of COVID-19 infections. Is this due to a lack of science translation or just a lack of access to information in general?
Prof. Ikemoto- So the question is about rates of infection?
Host- Well, I guess the observation is Hispanic communities are being more impacted, and is there a lack of information that's leading to that phenomena either due to I guess the lack of translation of science information or just lack of the access to science information?
Prof. Ikemoto- Yeah, that might be a factor. I don't know, I haven't been sort of following the extent to which public health education has been set out. For people who can get their information from the internet, a lot of the public health sources like Yolo County's website is in multiple languages, for example, that doesn't necessarily mean that everybody who speaks those different languages is using that particular website. So sometimes for different audiences or different communities, different means of communication are necessary. But I think it's also, it goes to the other kind of structures that I talked about. The way the labor sector is structured, the way that housing discrimination puts more people in close contact with other people, the way that poverty correlates with racial structures as well and makes it difficult, right, to socially isolate and avoid infection. So my guess is that I don't know so I'm sort of making things up right now, but my guess is that's a multiple of factors.
Host- I'm sure it's a complicated story. I was struck, I was reading this morning. I was finishing a "New York Times" magazine article on the New Orleans sort of hotspot for infections that came about right around the time of Mardi Gras celebrations. And one of the things I was struck about in that story was how one of the people who were infected early in an African American household went to get, you know, was running fevers and went to get some testing done and all would do is test for influenza. And this is in mid-March, and it was never even brought up that there is, maybe he had COVID-19 and certainly there was no test offered. And it's an anecdotal, it's one person, but I just, yeah, no, it just seemed unbelievable to me that A, the doctor or clinic didn't at least address it or B, that that person didn't know. And that's the question I was left with after reading the article is like, why?
Prof. Ikemoto- How could that happen at mid-March, yeah.
Host- Right, in mid-March so I don't know. Is that a access to information thing? Or maybe it's more structural like you're saying. You have this tradition of not feeling like you have the power of the information to begin with so maybe it's very hard to be your own advocate in a health situation.
Prof. Ikemoto- Yeah, and there's also just racism in healthcare between doctors and patients, that could be it. So maybe if you're thinking there's only a few of these tests available, who am I gonna use them for? Who am I gonna tell? Which of my patients am I gonna tell about them? You know, I mean, I don't know what happened in this particular instance, but that certainly happens. We use healthcare resources in racially disparate ways.
Q: A question from a student about equalizing how we value individual lives in the public eye. I guess another way to say it is yeah, different groups. Would encouraging more resources into institutions with broader reach like the American Medical Association and more hospitals and clinics be a place to start?
Prof. Ikemoto- You know, I'm not sure. I mean, part of it's about whose stories get heard so maybe that's something to keep in mind with the PSAs. One of the things I've been trying to do, you know, all the time that I'm spending online these days to keep myself busy is reading the individual accounts and the family accounts of how people have been impacted either because they're isolated or they can't isolate, they lack the resources to do so or they're sick or a family member is sick and they're separated from them. To me that makes a difference, and I think other data has shown that's true as well. That sort of shifts somebody out of the category of a statistical life to an identified life. So you know, that's one little piece of it, but I think that's important.
Host- That's a great point. I think one of the things I felt very early in the pandemic was just a little disconnected. I mean, I knew the numbers, I know the biology, but it wasn't until the anecdotal reports started coming out from patients and families that it sorta hit home and it became more real, and I do think that's, you know, there's a call in there, students. You know, you're trained as a biologist, but you can also tell important stories whether it's your profession or part of being a healthcare worker, and I do think that is incredibly important. So I definitely appreciate that recommendation. I think it's good. Oh goodness, there's more questions. Let's see, where are we here? Okay, I'm gonna read this. Forgive me if I, yeah, okay. So a student asked about what you think about the claim being made that the contact tracing app is, and I quote, big dick data. Actually the term in data feminism apparently, and that there are promises being made for the outcomes and these promises are the sake of funding, in other words, what the ethics of making such grandiose promises? That's a good question actually. It took me a while to get through the question, but thank you for asking that.
Prof. Ikemoto- Yeah, so the question is, just to make sure I have this right in my head, it's about, maybe the pitch is really coming for the purpose of boosting the profit line of the tech companies.
Host- Yeah, I think that's a really important, and the person just said yes, so yes, that's a really important question for us biologists to think about, yes.
Prof. Ikemoto- Yeah, I think it's a really important question. Certainly, you know, science, even academic research has been in a sense industrialized, right? That's really ramped up since the 1980s. And so profit is part and parcel of how you get things to market, right. And getting things to market has become sort of one of the primary goals. And I think sometimes we forget that. We think of science as special and altruistic, but that's not always true so it's a really good question.
Host- Yeah, I think it's a complicated one, too. And I always find myself a little torn. On the one hand because there are so many companies rushing to make vaccines one could argue that we have a higher chance of hitting a good vaccine. Maybe, although as a scientist I don't know if that's really true, but at least in principle that could be true. On the other hand, yeah, I mean, somebody's gonna make a lot of money and charge a lot of money for this especially if there's not a government subsidy for the vaccine ultimately when it comes out. So I guess that's a real question for our students to sort of deal with. Some percentage of you guys'll end up working in biotech, and that's not a bad thing. I mean, there's some fantastic biotech companies out there, but how do you balance this drive for profit versus public good versus asking basic kind of questions about science? And yeah, we could all use help with that.
Prof. Ikemoto- Yeah, and how much is good marketing sort of determining which are the best products, right? Or, what's gonna help us best to deal with this pandemic? Is it really about efficacy or is it really about marketing and messaging?
Host- It's a good question, and I don't know if anyone knows the details of this but I guess I was reading about the information that was quoted about the Gilead drug that was coming out, and there was some implication that it was actually a leaked information from a private conference by a Gilead exec to drive up prices. And so I don't know if that's true. It's what's in the press at the moment.
Prof. Ikemoto- Right, but it has happened in the past.
Host- Right, so that's a great example where you can imagine a company is not doing the people with the disease any favors here, they're looking at their bottom line. So thanks, okay, I'm looking at the rest of the questions here. Okay, this is a question, and I haven't read the whole thing yet. So President Trump invoked the Defense Production Act to mandate meat processing plants stay open, did he? I did not know that As an essential service. What's your opinion on this kind of decision? Does the importance of keeping essential service open and feeding the masses hold more priority than lives of the factory workers who work in these factories? So there's another value of life question. Do we want hamburgers or do we want people to be okay?
Prof. Ikemoto- Yeah, so I should start by saying that I don't eat red meat so I might be biased in my response, and I know people's jobs and lives are on the line there, but in this situation the problem is that it's jobs versus lives. I saw a comment by somebody who said that, you know, maybe one effect of that order is not just about sort of food distribution but also it's putting the value of steak at a higher number than those of the employees who work in those places. I mean, the infection in some of those plants, it's really, they're scary numbers…
Host- Yeah, no, I'm not, I don't know the details of meat processing plants. I assume they're working closely together and that's what's causing it, but I don't really know other than you're right, the numbers seem, yeah, crazy. So I don't know, I mean, if prices on meat go up and people don't get reelected, is that the calculus here? I'm not sure.
Prof. Ikemoto- I hope not.
Host- I mean, is that why they're weighing in and saying, we can't let prices of meat go up? I mean, there's some actually health benefits if the prices of meat go up.
Prof. Ikemoto- True, true.
Host- So I'm not saying we should do that, and obviously the workers who are working there, that's another issue. I guess I can take us back to that a little bit. There's a lot of workers, like you said, who are economically vulnerable during the pandemic and therefore more at risk. In your view, are there other ways that we could have handled this? I guess we sent out $1,200 to people, and then there were some loans that I don't know where exactly they ended up. Have you some thoughts on how we could approach this differently moving forward or?
Prof. Ikemoto- So I get this from Ezekiel Emanuel who made the point that at this point there's close to $3 trillion the federal government has rolled out. So that doesn't include what the state and local governments have rolled out in addition to the contributions, right, that are coming from the private sector. I don't even know how many zeros in that, those trillions. I was a liberal arts major and I'm a lawyer now, and there's no math on the LSAT so I'll confess that up front, right, but that's a lot of money. So if you just think about the CARES Act which was I think the biggest amount of money used to boost the economy ever in the history of the United States. And the distribution of that money may accomplish some good short-term effects, but obviously some unfair ones as well. There's been a lot of criticism of how that money's been rolled out, but it didn't actually call for any kind of structural change, right. And the spending of that kind of money often comes, right, with a condition that changes be implemented and yet they didn't do that. They didn't take that opportunity to do that. So certainly going forward that could be one thing that we could do. So how much of that money is being used to protect people who work in these meat plants, for example so it's not just that they work close together but maybe they lack the masks and the other kind of protective gear that they need. They don't have access to healthcare that they need. Maybe they can't afford to take time off or aren't allowed to.
Host- Right. And I know there are a number of tragic stories of EMS workers who were busy getting infected but actually had no healthcare so you're just like.
Prof Ikemoto- Yeah, yeah.
Host- So I guess, I mean, my comment has no answer I'm sure, but it seems like, do we have no mechanism to think through the sort of assistance we were giving out? Or it was just, it had to get done so they were just gonna roll it out? Anyway, I don't know that there's an answer to that question but let's see, going back to the data there was a comment that I missed earlier and I want to come back to. So a student was, we were talking about technology and the issue of privacy and the student raised a good point, is the concern over privacy more about political grandstanding and less about actual concern for our rights? Yeah, I mean I think I've heard that rhetoric many a time when I brought up privacy issues, and I'm frankly always amazed when I talk to my students about this how most of them don't seem concerned about privacy issues so maybe you could give us some further context to think about the ethics of privacy here and how should we be thinking about it?
Prof. Ikemoto- So I mean, I think, my guess is that there are a wide variety of views and some of it's generational. And this isn't my primary area of work so I don't know sort of really if that's true. But I think we should take privacy seriously so it's not just about what information gets out there, but it's about, I mean, data and personal data right now, it has capital value. So databanks are capital assets, and that's the basis of a lot of power in the United States. So it doesn't just affect the person whose personal information is being used for good or bad, but it affects, sort of interacts with all these structures I've been talking about so it's not a coincidence that there are in the DNA databanks that are used in policing, disproportionate numbers of African Americans, Latinos, and other People of Color represented in there because that's who's more likely to get arrested. So for, you know, many of the reasons that have been discussed in public discourse for the past few years and the data that's collected just within the UC Medical Center is probably worth tens, hundreds of millions of dollars to companies like Google, for example. So I think we have to figure out how to think about it as citizens, not just about how it will affect us as individuals but how it will affect our society and how it affects democracy.
Host- Yeah, I don't know. I think you're right, there is a generational difference. Maybe, I don't know, I'm not sure. I grew up with a distrust of organizations that makes a lot of money so I just have an inherent distrust. So I start from that position, but I think, well I don't know, maybe some of our students, there was a comment that I thought was relevant. Technology moves faster than laws can counteract, and that's true, I mean, I definitely agree with that, but that doesn't mean we can't be discerning. Somebody else said, public health is more important than privacy, question mark? And I guess we sorta touched on this a little bit by asking ourselves, well, is that really the distinction here that we're making a choice between saving lives and privacy or is that being oversold to us? And I think that's a question that we need to deal with and think about, like you said, maybe it's not simple but we need to have a conversation about, you know, what are the risks and benefits?
Prof. Ikemoto- Yeah, I guess part of what I was trying to get to is that sort of private vis-a-vis who or what?
Prof. Ikemoto- So my biggest concerns in my research are about commercialization of private information and how that's used with or without my permission 'cause I think a lot of power exists sort of not in the government now but in the corporate world. And there are fewer, maybe this is true, but I'm gonna this for now for purposes of conversation, I think there are fewer checks and balances on corporate power than there is on governmental power. And the Constitution doesn't apply to corporations.
Host- Right, and so we have a concern about, after 9/11, Edward Snowden, NSA, you know, the government gathering up our personal information, but one could easily make the case that private companies hold way more of our personal information at this point and yet there are no checks and balances. Lots of comments in the chat. Data should move to be, oh, a human right.
Q: Is your data a human right or the privacy of your data a human right? Is that something that you would advocate? I mean, there was a lot of discussion, I know in Europe, about this idea.
Prof. Ikemoto- Yeah, it's been really interesting 'cause Europe just very recently implemented very strong protections for digital information, privacy protections for information. And I haven't heard much about that law since the pandemic started so I assume it had exceptions for public health emergencies and maybe that's what's going on and our own privacy protections in the United States like HIPAA have exceptions for public health purposes and so we have those exceptions here as well. But yeah, maybe we should think of that. I don't necessarily think all data is as important, and maybe one thing we also need to think about is, maybe there are differences in who values what other information, and who would want to protect what information from access by others. We haven't had that conversation.
Host- Right, and I think that's one of the issues that makes it, technology that makes it so difficult is that so much of that information is behind a wall. It's very hard to know even what companies are gleaning from your search histories. I mean, we know they do something, but it's not easy to go and look. Oh, no, don't look at this, don't look at that.
Prof. Ikemoto- Yeah.Or just as another example, it took an act of Congress to give patients the right to access their own medical information. So you now have a right to get your own medical records that you didn't have before.
Host- I had no idea. I just assumed that you had a right to your medical information, complicated. So in terms of, sorry, in terms of the work that you're doing on, I guess, and you can help guide me on this a little bit, on the economics of certain healthcare access. Is that the right way to say it? Can you remind us a little bit about the focus of your work?
Prof. Ikemoto- I do some work on healthcare disparities. And maybe another sort of aspect of the work that's relevant to this conversation is I also think about issues of eugenics and how it's surfacing now in the market, in the biotechnology markets.
Host- I think that's a, yeah, that's a fascinating area. I think one of the questions I had when I was reading over some of your work was the notion that, and it's already happening a little bit and I'm sure it'll happen more, that there are potentially genetic predispositions to having worse clinical outcomes with COVID-19, and how does that play out? I mean, it ties back a little bit to our immunity card idea, that you could have different classes of people in society. So how do we begin to think about the fact that there might be some real biology underlying this but yet we have to navigate a healthcare system and a way of delivering equal, hopefully equal access to healthcare.
Prof. Ikemoto- Yeah, so we already have predispositions, right? I mean, one of the things that's happened is that now the definition of health that's used in daily conversation and certainly in biomedicine is based on the idea of risk factors. So when I talk about this in my healthcare class one of the points I say is that nobody is perfectly healthy anymore, you know, it was a few decades ago the idea that you were healthy or you were sick. But since the Framingham Heart Disease Study it's all about sort of how many risk factors do you have. Nobody's perfectly healthy. Everybody has at least some risk factors so we all have predispositions. It doesn't necessarily mean that they'll all sort of manifest as illness or injury or anything like that. So that way of thinking about people and categorizing people isn't new, it's sort of background, right? But now it's become clear that certain types of conditions put you at greater risk if you get infected with coronavirus, and then as you said, if you add another one, if it turns out that there's some sort of gene profile, right, that makes it more likely that you will get coronavirus or maybe some sort of gene profile that indicates that you're resistant to coronavirus infection or maybe that makes you more likely or less likely to die, then that's another risk factor. So it's not, the biology of it's there, right, isn't the problem, it's sort of what we make of it, right? So we know insurance companies make a lot of it. That's one of the key protections that the Affordable Care Act introduced was that insurance companies aren't allowed to discriminate on the basis of preexisting conditions or risk factors. So it certainly plays out in that part of our world as well.
Host- I was struck recently, I think it was in the same "New York Times" article I was reading about how one of the members of that, I think it was a public health official in the New Orleans area was concerned about how people were saying, oh, African American, they don't eat well. They're just not healthy so they're more susceptible. And she was saying, and I thought it was, she made a good point but I also thought it fed into that language. And her point was, well, don't talk to me about that. We live in polluted areas, and pollution, you know, is giving rise to asthma and that's giving rise to increased risk, but it's still part of the same language of blame, you know, that there's some blame inherent in--
Prof. Ikemoto- Yeah, it's personal.
Host- It's just such a hard conversation because you're admitting that oh, yeah, so, maybe our population is more overweight than other parts of the population, but anyway, how do you navigate that, right? I mean, we all have, like you said, different genetic predispositions or different access to good food or bad food so how do we have that conversation in a way that isn't about blaming.
Prof. Ikemoto- Yeah, I think part of it's about that language of blame. It's not new, but it's ramped up I think along with neoliberalism, so that idea of personal responsibility. That phrase has become so common, again, since the 1980s. So one of the things that strikes me, and this is in some of my earlier research is about how when we think about health and individual health and also group health, population health, we tend to focus on the body, right? As if everything that has to do with health is contained within that single body like from the skin and within, right? And then there are two explanation that are prevalent that we talk about. So one is things like genes, right. So the biological factors. And then the other one is behavior, right. And both of those are considered sources of blame in the past few decades. Things that we're supposed to take personal responsibility for so even if it's genetic and you didn't choose those genes, right, you're still responsible for doing things that mitigate the risk that those genes create, right? And that view's very convenient, right, because if you don't look beyond the body or the bodies if you're talking about a group of people, then you don't have to take into account things like environmental factors and the fact that low-income people are gonna live closer to things like chemical toxins because they live closer to manufacturing. So you don't have to think about the more expensive fixes we would have to make. We don't have to think about the way we'd have to hold corporations accountable or deal with residential segregation, for example, those much bigger structural changes that we'd have to make in order to really address those kinds of issues so it's convenient.
Host- Yeah, I think that's a very good way to say it. A follow-up question related, how do we escape this cycle of biological determinism and victim blaming? I don't know if there's an answer exactly to that other than have these kind of conversations, but what are your thoughts.
Prof. Ikemoto- Yeah. That's a political question. I mean, not necessarily red and blue politics so it's not necessarily fixed by voting although voting might be one way to respond to it. But it's about, like we're doing now, recognizing the way that these different ideologies shape the way we think about the science, so the way we think about genetics, right, or predispositions or risk factors and what we make of them and then calling them into question in conversation with others, right, or at the organizational level.
Host- Right, and I'm not a political scientist, but it just strikes me that our hyper-polarized politics certainly doesn't help because it's very easy then to create different groups and then assign blame to those different groups rather than saying, we all live in a country that's connected. Atmosphere's collected, climate's connected, you know, healthcare ultimately is gonna be connected so we should seek problem solving together. Anyways, that's my soapbox, but yeah, I think it's a challenging conversation. I should point out that not all students find technology privacy a nonissue. Somebody wrote quite a nice little piece on why they're concerned about it so I stand corrected. It's a good point.
Q: What is the role of government in sharing public health information with at-risk groups? Can the government be relied on to properly warn these communities in the face of specific risks?
Prof. Ikemoto- That's a really good question at this particular point in time. So, you know, maybe one of the advantages of some of the disarray that's coming from the federal government is that the states have had to step up, and some states have done a good job of that. And so maybe, you know, maybe what's coming to light is that what's important is to remember that we have government in different places at the local, state, and federal level. And sometimes we have to be astute about which government is providing the information, but public health education, it's such an important tool that to the extent that it's being misused or underused we should protest.
Host- There you go, get out and vote even if it's by mail. Vote in the fall…
Prof. Ikemoto- Use your voices.
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B3 Lab postdoctoral scientist Alexandra Colón-Rodríguez, Ph.D. curated this page, the transcripts and translations.