Science Friday - HIPAA Explained, Trans Research, Queer Scientists. June 24, 2022, Part 2

Episode Date: June 24, 2022

What Does HIPAA Actually Do? HIPAA, the Health Insurance Portability and Accountability Act, is name dropped a lot, but frequently misunderstood. Many are surprised to find that the “P” stands for portability, not privacy.  Misunderstandings about what’s protected under the law go way deeper than its name. The law outlines protections only for health information shared between patients and health care providers. This means that any personal health data shared with someone who is not specifically mentioned in the law is not covered.  If a period tracking app shares personal health information with Facebook, that’s not a violation of HIPAA. Neither is asking for someone’s vaccination status.  Guest host Maddie Sofia talks with Tara Sklar, professor of health law and director of the Health Law & Policy Program at the University of Arizona, to explain what’s actually covered under HIPAA.   “Research By Us And For Us”: How Medical Research Can Better Serve Trans Communities Trans medical care isn’t new or experimental, and study after study has shown that transition-related procedures—such as hormone therapies and surgeries—are incredibly safe and effective. But most long-term studies on trans health focus on the first few years after transitioning, leaving unanswered questions about the years after. Similar to members of other marginalized groups, trans people have long been treated like “case studies,” rather than potential experts when it comes to scientific research. So while researchers have studied trans bodies for decades, they haven’t always asked trans people what they need to know about their own bodies, such as: If I’m pursuing medical transition, how will my bone density change after years of taking estrogen? If I take testosterone, will I also need to get a hysterectomy? How will my hormonal and surgical options affect my fertility?  Now, a new wave of medical research—led by trans medical experts themselves—is trying to fill in those blanks and address the needs of trans communities. Guest host Maddie Sofia speaks with Dr. Asa Radix, the senior director of research and education at Callen-Lorde Community Health Center, and Dallas Ducar, nurse practitioner and founding CEO of Transhealth Northampton. They talk about the state of research on trans health, and how studies can better address the needs of the trans and gender diverse communities.   Food Pantry Venison May Contain Lead Iowa requires warning labels about the possible presence of lead in shot-harvested venison. Kansas, Missouri and Nebraska do not. A walk-in freezer about two stories high sits in one corner of a warehouse owned by a food bank called Hawkeye Area Community Action Program Inc. in Hiawatha, Iowa. Chris Ackman, the food bank’s communication manager, points to the shelving racks where any donated venison the organization receives is typically stored. Known as the Help Us Stop Hunger, or HUSH, program, the venison is donated by hunters from around the state, and Ackman says the two-pound tubes of ground meat go pretty quickly, lasting only a few months. “It’s a pretty critical program, I think, because there are a lot of hunters in Iowa,” he said. “And, it’s well enjoyed by a lot of families as well.” Similar programs around the country have been applauded as a way for hunters to do something they enjoy while also helping feed those in need. Iowa hunters donate around 3,500 deer a year through the program. From the hunters, the deer goes to a meat locker, where it’s ground, packaged and shipped off to food pantries around the state. But before it hits the shelves, Iowa officials require a warning label on the venison package. The label reads: “Lead fragments may be found in processed venison. Children under 6 years and pregnant women are at the greatest risk from lead.” Then, in bold type, the label notes: “Iowa has not found cases of lead poisoning from lead in venison,” along with a number to call for more information. Iowa stands out among Midwestern states in requiring a label warning about the potential hazard of lead ammunition and the fragments it can leave behind in shot-harvested game meat like venison. Donated venison in Kansas, Missouri and Nebraska come with no similar warning label. Read more at sciencefriday.com. Museum Exhibit Celebrates Queerness In Science Last year, the California Academy of Sciences debuted “New Science: The Academy Exhibit,” which celebrates 23 incredible LGBTQIA+ scientists. The folks in this exhibit are challenging the exclusionary practices that are all too common in scientific spaces, with the aim of creating a more inclusive and welcoming environment. It is a celebration of queerness in science. Guest host Maddie Sofia talks with the curator of this exhibit, Lauren Esposito, who is a curator of arachnology at the California Academy of Sciences and founder of 500 Queer Scientists, based in San Francisco. They discuss the exhibit, the importance of LGBTQIA+ representation in STEM, and, of course, arachnids. The exhibit is free and open to the public at the California Academy of Sciences, and it is also available online.   Transcripts for each segment will be available the week after the show airs at sciencefriday.com.       Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.

This is Science Friday. I'm Maddie Safaya in for Ira Flato this week. You've probably heard about HIPAA, the ubiquitous health privacy law. And if you've ever gone to the doctor, inside that stack of intake forms, there's a HIPAA release. But do you know what that acronym stands for? The Health Insurance, Portability and Accountability Act. The P stands for Portability, not Privacy. and misunderstandings about what's protected under the law go way deeper than its name. Asking for somebody's vaccination status.

Nope, not in violation of HIPAA. Your period app tracking your personal health information and sharing it with Facebook. That's not violating HIPAA either. So what does HIPAA actually cover? Joining me now to explain that and more is my guest Tara Sklar, professor of health law and director of the Health Law and Policy Program at the University of Arizona based in Tucson, Arizona. Professor Scholar, welcome to Science Friday. Oh, thank you. Great to be with you. Let's start at the start. What was the original focus of HIPAA

when it was enacted 25 years ago? Right. That was quite a long time ago. And related to what's happening today, it was a response to technology. There was a big increase reliance on how computers we're starting to become more mainstream and being used in healthcare transactions. So with that, there was this growing concern among the public and Congress about how to help keep health information safe and secure, as well as an administrative simplification process with this new computer technology. So it was passed with bipartisan support from Senator Edward Kennedy, a Democrat, and Nancy Kessarvam, a Republican, and then signed into law by Bill Clinton to really address a number of different areas, but those were the primary ones where, as technology was becoming much more used within

these healthcare transactions, how to help people feel safe and sharing this information about their private healthcare diagnosis and treatments and payment of, along with really trying to reduce those building administrative costs as different states and agencies and health systems are all operating very differently in terms of providing health care. Okay, so it's like kind of logistical. It was about getting healthcare computers to be able to kind of talk with each other. Yeah, in many ways. And that's sort of an interesting The fact about HIPAA is it really had a very limited scope, right? It was really meant to just help those health care transactions become more simplified by helping the people feel more

protected. So it only applies in this very specific clinical health care setting. But, you know, back then it was the big technology advancement was computer. You know, now it's exploded, right, in all these different ways. Yeah. So what security and privacy protections does HIPAA provide for your health data? Well, it's really what would be involved. in your typical electronic medical record. So anything about your care, what your diagnosis might be, your treatment, operation therapies. Importantly related to this is payment of such treatment. So you define the acronym really clearly and said where the P is for portability, not privacy. And I'd just like to add to that that the I is for insurance, not information.

Yeah, I think like there might be this assumption out there that HIPAA protects all of your personal health data. But that's not really the case, right? It's actually, you know, based on who you are and who you were sharing your health information with. So who's covered under HIPAA and who's not? Yeah, that's such an important delineation. It absolutely only covers what you might think of in a clinical health care setting. So it would be your doctor, clinicians, anyone providing health care in a reimbursement setting where you have your then-your-payers. large health insurers. And then there are other entities related to that. They're called business associates that help manage those types of services, but it all specifically pertains to

your diagnosis and treatment of care and payment of. Okay. That's interesting because, you know, I do notice that sometimes a health app, like a meditation app or something like that, says it's HIPAA compliant. What does that mean? Can it actually be HIPAA? Yeah, there's HIPAA compliant. And there's also HIPAA certified is another one that these these mobile health apps or wellness apps that become so prevalent and you know and for a real need I use them too I think there can be quite helpful in terms of what they provide but they they can't be HIPAA compliant because they're not a covered entity they can operate under a way in which they're following the principles and guidelines of the federal law which I think ultimately is a is a good thing but it's it's

It's a misnomer to say that it's HIPAA compliant or HIPA certified when it's not an actual covered entity. And the other thing I want to relate to that is another acronym within the law that's called PHA. And that stands for protected health information. So in addition to the law only applying to these very specific covered entities, the protected health information has to come out of these covered entities. It's not just from you or me uploading our data onto an Apple. or garment wearable. It's actually coming out of this clinical health care setting framework. So HIPAA does allow the sharing of anonymized health data outside of the doctor or hospital. Can you tell me a little bit more about that, like what HIPAA requires in that circumstance?

Sure. So basically, what HIP is trying to prevent is identifiable information getting back to parties that aren't part of this clinical health care framework. So that means if you can make this data anonymous, they've specifically stated these 18 identifiers. So those would be things that could associate your health information with you, your name, your age, your birthday, where you live, your email address. And now, and it has advanced here, your IP address, your biometric identifier, your voice or fingerprint, any characteristic that could be linked back to you. If those are all removed, removed, if you remove all of those 18 identifiers, then it can be shared. Hippo will no longer apply because it can't reasonably be traced back to you as the thinking. When you say, is that the

thinking? Is that the reality, like in function? Well, you know, the broader discussion about these issues is how hippo was passed in 1996, right? So how much law is lagging behind technology here. So there are very sophisticated re-identification algorithms that can be used. So you have to wonder, will this be able to keep up? These identifiers, is it enough where you can't be, again, recently identified based off what's being provided? Talking to you, the law does feel pretty straightforward in what it covers and does not cover. So Tara, why do you think it's so often misunderstood? I mean, like you, I've heard people just like randomly yelling HIPAA throughout the pandemic. Like, why is it so difficult to wrap our heads around? That's true. They randomly yell it and then they,

and then they misquote the basic acronym. Right. It doesn't bother you at all, I'm sure. Yeah. You know, I think it kind of gets to another point you raised earlier on where we have a false belief that our health information is protected. I think there is this desire that we want personal, sensitive information about our health to not be disclosed in a way that might stigmatize us. potentially discriminate against us in employment or for insurance purposes or it could be used for something we object to. So it's important that we feel like this information is protected, but in reality, it increasingly is not. So I think, so to get to your question, though, is why is it so commonly misunderstood? So yeah, I think it does reflect this preference,

but we don't want this information widely shared in a way that could harm us. And it's also so familiar now. It's almost like a snowballing effect. Yeah. Where we're very, very familiar with going to the doctor, signing the HIPAA release. It's something that we've done, it's just part of our culture now. And so it's a very accessible law. It's probably one of the most familiar. In fact, I'm a health law professor. And the first question I get asked about my field is usually about HIPAA because it's in the public mindset. And I think people think it does more than it actually does. And that also shows just this absence that we have now of an active federal consumer privacy law that we can rely on.

Right. Yeah. You know, we've discussed HIPAA does not cover all forms of health data. What needs to better happen in your eyes to secure our health data? Do we need a new law that does more closely match, this misconception of what HIPA does? What needs to happen? This recognition is certainly happening. And there are some states that have acted where there hasn't been a very strong action at the federal level yet. So California has enacted the California Consumer Privacy Act that went into effect in 2020.

And now two additional states have enacted their own state privacy laws, that being Virginia, the Virginia Consumer Data Protection Act, and also Colorado. So I think the more and more states begin to do this is going to push us towards some kind of federal action because the last thing that everybody wants is a patchwork of state laws requiring different things. So I think in the meantime, given everything that's happening in our nation and around the world, what we can do as inform public consumers is also critical to consider right now. So now that we are getting a better understanding of what HIPAA does cover and what it doesn't and how much health information is out there about us, what can we do to help protect ourselves and those around us. And so some basic things to consider, especially in light of what's happening with reproductive rights in America, is if you do want to purchase a pregnancy test at a store over the counter, to do so with cash. If you are on a local app, it's a mental health app or something that you think could be potentially stigmatizing, just be aware of that information could be used and reused. And as we're in this gap in terms of what's happening at the state level, at the federal level, with health information, just to be an informed public about what we're uploading about ourselves and what could be used or reused in a way that we might find objectionable or want to minimize. So that's something that I think it pushes toward a federal law, which I do think is the ultimate desirable effect in this area.

You know, an update, it wouldn't be hip, I would probably need to be a new act altogether, given how the wide range in which we are inputting our own data and our expectations over how that personal, not protected, personal, how information can be used or reused. also on the other side of the coin to begin to have a higher level of holding these different companies accountable that are collecting this data. And that's something that these different state privacy laws are doing and should also be part of any new legislation. All right. That's all the time we have. Thank you so much, Professor Sklar for coming on the show. Oh, thank you. Pleasure to be with you. Tara Sklar is a professor of health law and director of the health law and policy program at the University of Arizona based in Tucson, Arizona.

We have to take a quick break, and when we come back, how medical research done by trans people leads to better health outcomes for the trans community. This is Science Friday from WNYC Studios. I'm Maddie Safaya. Transmedical care isn't new or experimental. Procedures like hormone therapies and surgeries have been proven safe and effective in study after study. But there's still a lot we don't know about how best care for trans people

over the course of their entire lives. Like members of other marginalized groups, trans people have long been treated like case studies rather than potential experts when it comes to scientific research. So while researchers have studied trans bodies for decades, they haven't always asked trans people what they need to know about their own bodies. Like if I'm pursuing medical transition, how will my hormonal and surgical options affect my fertility? Or if I take testosterone, is it a good idea? to get hysterectomy. But now, a new wave of medical research led by transmedical experts

themselves is trying to answer those questions. To tell us more about the state of research on trans health and how studies can better address the needs of trans and gender diverse communities are my guest, Dr. Asa Radix, the senior director of research and education at Callan Lord Community Health Center based in New York City, and Dallas-Ducar, nurse practitioner and founding CEO of TransHealth Northampton based in Northampton, Massachusetts. Welcome to Science Friday, y'all. Hey, there. Hi, Maddie.

Hi, Dallas. Okay, so I want to start with what we can confidently say that we know about medical transition, which can include hormone replacement therapy or HRT. Dallas, can you walk us through what we kind of know for sure? Sure. So we know that there is a large amount of research that has predominantly been studied in cisgender populations. And we've seen that hormone replacement therapy in that research has really no, at least immediate, deleterious consequences or bad effects. And we also know in terms of

puberty blockers that those have been demonstrated for years in cisgender populations to also not have any deleterious or bad effects in puberty. We also know that in the case of of transgender individuals, whether they're hormones or blockers, that we see pretty robust psychological benefits for trans individuals, transgender diverse, non-binary individuals who are affirmed in that their gender. And that may be through hormones and blockers, that also may be through the prospect of social transition to using the right name, the right pronouns, being able to dress in the ways that they feel affirmed. But a large amount of the, at least biomedical research so much has been focused on cisgender populations. And only recently there's an eye towards studying

transgender populations. I know that there are still, you know, some open questions out there in this realm. But I think, you know, the better question or the better thing to really focus on is access, right? Because that is probably the largest issue and also plays into why we don't know some of these things. Is that fair to say, Asa? Yes, I think it is. I mean, the biggest concern about trans health care or people working in trans health is that trans people really don't have access to medical providers for any type of care. It's not just about access to hormones. It's access to primary care. It's access to cancer screening. It's access to imaging studies. Providers actively discriminate against trans and gender diverse people, you know, from getting into the

clinics and not being able to actually register appropriately using, you know, your name, not being able to let people know about your pronouns. The issue of, you know, hormones, no hormone surgeries, not every person wants to use hormones or wants to have certain surgeries, but everyone needs health care. I'm a medical provider and I don't feel safe getting medical care. Yeah. Right? So what does that say about the system? I would agree with ASAT that the biggest issue in gender-forming health care is just being able to get access. Right now we're seeing rollbacks in terms of telehealth across the country. We're obviously seeing policy in red states especially that are barring any type of access to care. And then we even see in states like New York and Massachusetts and California. many individuals that are still unable to access basic care. So if we know gender affirming care is life-saving care, why don't we have access to that life-saving care across the country?

And unfortunately, the dearth of access really leads to people dying and just a difficulty in conducting any type of research until you really garnered the trust of the community. Let's step back and look at the big scope of research on trans health. Do you feel like there's a divide between what researchers are focusing on and what patients want to know? Dallas, why don't you start us off? Yeah, I mean, I think a lot of the research that I have seen at least, Danesa, I don't know what you really have seen come across your desk, but, you know, it's been focused on trans people still exist, right? We know that there's recorded evidence of gender diversity since the Neolithic era. And so there is no debate on whether trans people exist.

There is no debate on whether this type of health care should exist. This is life-saving health care. And most of the research has still been focused on some of just the larger discrimination that exists out there, which we as trans people know exists. We really should be having research by us and for us. And when we do that, all of a sudden, there's no question. whether this is life-saving health care, whether we've been discriminated against, whether we exist. Instead, we can focus on, I think, some of the questions that really apply to us as communities of trans folks, which are, you know, what are some of the maybe more biological effects of certain

types of treatments, or what happens when you really have access to wide-ranging care, or what are some of the protocol differences in different types of trials, or, you know, what does, you know, what does good research actually look like? Right. Okay. I'm keeping that in mind, ASA, I'm wondering, you know, you see patients on a daily basis. What are the questions that you're getting, you know, with those gaps due to all of these very understandable reasons for the gaps in the research? What kind of questions are you getting? You're right. There are many questions that come that have not been identified as appropriate research questions. by the bigger research community, right?

So, you know, people have questions. So, you know, there are many different types of forms of estrogen and many different forms of testosterone. Is one of them safer than the other? You know, what are the appropriate doses that we should be using? But really, what are the safety issues? What are the long-term issues? For example, if you have as this gender women, you know, after they go through menopause,

the estrogen levels drop. What about, you know, a trans feminine person who's on estrogen? we need to change those doses as someone gets older? You know, I think those are questions that people often have. I think we do need to have research to answer some of those questions, but not whether or not we should have demerming care. Obviously, we do. Okay, so I recognize that there are still some open questions here, right? But Dallas, just put that into context for me, because that's true for a lot of medical research, right? I did psychiatry in my clinical prior to being in this role.

And most psychiatric studies do not study the long-term effects of psychiatric medication, right? And most psychiatric medication was not intended to be used for people in the long-term. But that's what we see in clinical care. We see people, for example, on antidepressants, sometimes their whole life, right? And we don't know what the long-term effects of those are, but we don't second-guess that, right? we don't look at long-term longitudinal studies for a lot of things. We use a lot of different types of medications off-label, too. So why are these criticisms being levied at trans-health care when really this is just the shape of the type of clinical care we provide in this country

and the lack of long-term research in many different clinical settings? I think there's this perception that this science is somehow driving the conversation or driving legislation or, you know, doing something like that. But, Delis, I mean, do you really think science is part of that conversation? Are these studies, you know, helpful in that way? In terms of trying to combat policy with some type of scientific information, unfortunately, I just don't think that's going to happen in today's political environment, at least for the GOP.

I do believe that when we want research to really, focus on the benefits for the trans and gender diverse community, then that starts by really centering the questions that our communities really value most. And I say communities because there are so many intersections of the trans and gender diverse communities that really might have different questions. You know, black and brown folks may have different questions than white trans folks in San Francisco or New York may have different questions than trans folks in Kansas, right? especially when access is different. And the real truth to this is, is the more research that we do, like Asa said, the better it is for sure. But there's also only a limited number of times that you can

really ask the same person to engage in a research study before they get tired of doing it. So I do think we have to be somewhat specific about the types of research questions that we ask so we don't contribute to fatigue in our own communities. So, Dallas, I mean, what does this type of community-centered research look like? What can be done to fill these gaps in knowledge for the trans and gender diverse community, and that can be done well and responsibly? You know, I believe that the gold standard here really, and it's hard to achieve, is community-based participatory action-oriented research.

And what I mean by that, if we break that out, is community-based. It is rooted in the communities that we are trying to serve, right? It's not research on. It's rather research with. It's participatory, right? So instead of having some type of investigator who is removed from the community, especially many different oppressed communities, really having investigators with that insider identity, right, to overcome any mistrust when there's perceived outsiders would also reduce exploitation, objectification, increase our accuracy, the integrity of the research, the ethics of it, and really be able to hone in on the conversations that matter. And then action-oriented to have research that doesn't just report out to a journal,

but also is really intending on making some type of ethical action-oriented change in the communities that we're trying to serve. So it's not just observation. serving and leaving or some type of, you know, parachute research where you drop in and drop out. And so really making this research that is driven by us, for us, and that has outcomes that directly serve our communities. I'm Maddie Safaya, and this is Science Friday from WNYC Studios. We're talking about the state of trans health research. Asa, I know you partner with a lot of different academics and you conduct research.

What are things you look for in a good study? Yes, we do get approached by many academic centers. And I think the first thing is the research question. You know, is it something that is going to be valuable? And how did they create the research question? Was it something that they actually spoke to community members about? Rather than, I'll give you one example. You know, a researcher might be doing research in a particular area, say amongst, you know,

cisgender women for years and then all of a sudden a funding opportunity occurs and they think, oh, I'm going to just take this research and I'm just going to change the gender to transgender women or to transgender men depending on the research. And they think that they can just actually conduct the research in exactly the same way. And that's just not possible. You know, I think as Dallas said, you really need to understand the community and understand the community needs before doing it. So first the research question, then we always look at the researcher. So if a researcher comes to us and clearly has, you know,

no connections to the trans community, has never worked within the community before, just doesn't have the skills. That's also a red flag. So I want to know from both of you, What is your vision for the future of trans health research? Aisa, let's start with you. I mean, I would love to see old research being done with trans communities, really centering those communities as far as what are the research priorities, also ensuring that trans researchers, and there are many trans researchers across the United States and beyond,

but are included at the highest levels, not just coming in as part of a community advisory board or as research assistants. And of course, research assistants are important, but we want more trans people actually leading the research. And that's really, I think, my goal, and which is why we mentor so many, you know, young people coming up through programs,

master's programs, PhD programs. We really want to see them continue to lead where this research is going. Yeah, absolutely. What about you, Dallas? You know, I think one of the beauties of gender affirming care in general, which is where this research really comes from, is it's caring for the whole person, right? It's caring for all of their needs. And I really believe that we are seeing new waves of transgender diverse clinicians that are really offering a different model for health care, one that is, led by informed consent, that is trauma informed,

that is a new type of comprehensive healthcare that I don't think we've really seen before. And I think really taking a step back, looking at the larger picture, and then saying this is really the framework for all research happening in this place, will not only improve the quality of research in trans health care, but also we're really

improve the research and the ethics across the board if all others follow. So I really do believe that the trans and gender diverse community can show the research community what good quality research looks like. Before we go, you know, is there anything that either of you want to leave our listeners with? You know, I think that for every trans person or trans or gender diverse person out there, you deserve to be seen and heard. and affirmed, whether that's through your own clinical care, you deserve to be cared for. And I believe when we really take the time to invest in hiring trans and gender diverse folks and really ensuring that they are a part of the health care system or the research,

that we have a tremendous opportunity to really raise the bar for all of this research and show what real community-driven science and care can look like. I think that's a great note to end on. I really appreciate both of you and your time. Thank you so much. Thank you. Okay. Goodbye.

Dr. Aceratics is the Senior Director of Research in Education at Callin-Lord Community Health Center, based in New York City. And Dallas Dukar is a nurse practitioner and the founding CEO of TransHealth, Northampton, based in Northampton, Massachusetts. Big thanks to Cassius Adair for consulting with us on this segment. Next up, regulating meat at local food pantries and some queer nerd joy. This is Science Friday. I'm Maddie Safaya. And now it's time to check in on the state of science.

This is KER News. St. Louis Public Radio. Iowa Public Radio News. Local science stories of national significance. In some Midwest states, venison is an important source of protein of vitamin. available in food banks. That meat is often donated by hunters. But some hunted venison can contain lead fragments. And Kansas, Missouri, and Nebraska don't require warning labels about that at food pantries. Food safety advocates say that's a big problem because some people who use food banks

are already at increased risk for health complications. Joining me today to walk us through this story is my guest, Samantha Horton, fellow with NPR's Midwest Newsreepisode. and the Missouri Independent based in Indianapolis, Indiana. Welcome to Science Friday, Samantha. Thanks for having me, Maddie. Okay, let's talk about how the venison actually gets to the food bank in the first place. I mean, how does the meat go from like hunters to shelves? Yeah, absolutely.

So a lot of states have hunter harvested donation programs where hunters go and hunt and then they choose to donate what they kill to food banks. So for this story when we were talking about, deer season, a hunter kills a deer, takes it to a meat locker, and the program has meat lockers listed that participate in the program. And so those lockers then will process the deer by cutting it up, grinding it, and then packaging all the meat up into packages that the program has designated as the official packaging. Then those get shipped off to food banks, and then those food banks decide how to distribute it among their local population. Okay, got it.

Samantha, do we know how common it is to find lead in donated venison? So that's probably the hardest thing to put a number on. And it's just because not necessarily a lot of states have in-depth studies or research that they've done looking at this. One state that I talked to, Minnesota, who does examine their donated venison, they say that they have, in the past six years or so, discarded about 10% of the packaging that they have. to have lead in it. So it's still a decent amount that they feel. I would did test 10 packages and found two of them to have traces of lead in them. But talking with experts, there's a concern there because some pointed that that's not necessarily a large enough sampling to really get an idea of how common of an issue that would be for the state. And are people finding lead levels

in donated venison like high enough to be dangerous? And, and who, Who's most at risk? Yeah, so these are low levels of lead that we're talking about. So a lot of the things I talked about people was the frequency that someone would consume game meat that plays into this possibly. But at the same time, the CDC has stated that there is no safe blood lead level in children that's been identified. So, you know, there starts playing this whole part of, is this preventable? Is this, you know, it's maybe another source of exposure for folks? that's a part that becomes a concern and it's like one more exposure, while it might not be high enough to have a blood level that would cause them to investigate it, it still could cause harm.

And for children that can include effects to IQ and behavior. Got it. I mean, what kind of warning labels for lead exist in the Midwest states that you looked at? Are people aware of this? So the only state I found a label for was Iowa, and that's actually how I started this whole story was with I was labeling because it was interesting. It was something I didn't see other states having at all. And I mean, their label reads, like lead fragments may be found in processed venison. And I note that children under six years and pregnant women are at the greatest risk from lead. But at the same time, they put in bold that Iowa has not found cases of lead poisoning from lead in venison. And so it's there, but it's also where there's a lot of, I feel like, questions that become a thing then of like, why did this have to be put on the packaging? Is it enough of a concern to have a warning should more be done to prevent it? Why is there maybe not more research the state could be doing possibly to understand that? I mean, how does states actually test for lead in venison? So Minnesota is one of the only state that I came across that actually has a testing program for their donated venison, which really stood out to me.

They x-ray all their shot harvested. Venison costs about $7,000 to $10,000 each year transporting the meat to a testing facility. They'll x-ray it. And I spoke with Minnesota Department of Agriculture's Nicole Nyser about if she thinks it's worth the money to test. And she said it is. Well, we look at it as a public health safety issue. It definitely is one that we have to address. And we would ask other processors to do the same.

I don't think anyone would be excited about food in their refrigerator if they knew that it had lead in it. This becomes a food justice issue and the question of why people shopping at food pantries should expect anything less than what people who shop at commercial stores would expect. Keeping that all in mind, do you think we could see changes in how states test for lead in the coming years? So talking about a lot of people during this reporting, that's something that I heard a lot of. is just this hope that, you know, from this reporting or just from this conversation happening, that states will consider at least testing their donated venison this next upcoming season in the fall and winter just to get a better idea of if, you know, how much of an issue it is in their state, just becoming aware of it. Because I think we just need more information. There's just,

I think, a gap in the knowledge and people want to know more. Okay, that's about all the time we have for now, I'd like to thank my guest, Samantha Horton, fellow with NPR's Midwest Newsroom, and the Missouri Independent based in Indianapolis, Indiana. Thanks for joining us. Thanks for having me. You can read her full story on our website, sciencefriday.com slash state of science. I'm Maddie Safaya, and this is Science Friday from WNYC Studios. Last year, the California Academy of Sciences debuted New Science, the Academy Exhibit, which celebrates 23 incredible LGBTQIA plus scientist. The folks in this exhibit are challenging the exclusionary practices ubiquitous in scientific spaces

and creating a better environment for everyone to participate in. It is truly a celebration of queerness in science. Here to tell us more is the curator of this exhibit, Lauren Esposito. She's also a curator of arachnology at the California Academy of Sciences and founder of 500 queer scientists based in San Francisco. Lauren, welcome back to Science Friday. Hey, Maddie. How's it going?

It's going. It's going. I'm excited to talk about this exhibit. I love talking about this exhibit. One of my favorite topics, I would say. Okay. So the exhibit was made in partnership with an organization you run 500 queer scientists. First, tell me a little bit about 500 queer scientists.

500 queer scientists is a visibility campaign that was founded in 2018. The point of it, the goal of 500 queer scientists, scientist is for people to be able to tell these first-person stories about not only their identities as incredible people working in science, but also being able to share that space with their queer and trans identities and really celebrate their identities within a professional context. Right. And the exhibit and 500 queer scientists are very much connected. So tell me a little bit about the exhibit, like what people will see when they check it out. Sure. So the exhibit is in the spirit of 500 queer scientists, which is like these first-person.

and stories, which I think is so, so important for people to be able to tell their own story and their own words. And what we're attempting to do, and I think what we've been able to do with new science, is really amplify the voices of queer and intersectional identities. And these are not only people who happen to be queer or happen to be scientists, they're people that are really revolutionizing the way that science gets done. And what you'd see walking into the public floor of the California Academy of Sciences is this panel of really beautiful portrait. In addition, what you'll see is like little snippets of information about them telling their story in first person, so really highlighting who they are and what they do.

And then lastly, what you'll see is a QR code that takes you to a page that has tons of information about them, including videos where they're telling their narrative and their story in first person, like short essays where they've written about themselves and why their queer identities have been so important to their own research and their own understanding of science and the world. Let's talk more about that because I think the unique thing, is that the exhibit really portrays scientists as their full selves, like celebrating their identities, as well as their work, how those are tied in. Why is it so important for scientists to be able to bring their full selves into a space? Well, I think that one thing that's really clear

within science, professional context, is that there's this heteronormative culture that silences conversations about gender and sexuality. The effect of that is that people are not out professionally, that people stay in the closet, that people hide parts of their identity. And I think ultimately that's really damaging for science itself, because it's really this idea that science runs on innovation, right? And where you get innovation is through ideas, but it's diversity that breeds ideas. So if you want people to be the greatest innovators

to really bring their best and full selves to tackle the challenges that we're facing in this century, then we need people to be able to bring their full selves to work. And that includes making space for queer and trans-ident. identities in the fields of STEM. Absolutely. Absolutely. I mean, there's just, you know, everybody deserves to be who they are, right, and have that been accepted full stop. But what you're alluding to is this element that your identity can also really help inform your work in your science. Absolutely. And I think that what many of these people say in their own narratives is that

it is exactly their identity that's, that's caused them to ask questions in different ways, that's caused them to really push the boundaries of their own fields in ways that have never been pushed before. And that's really an exciting way to progress as a scientific community. But also, I think what's, like, amazing about each of these 23 people is that they're holding the door open. They're envisioning a new version of science, which is where we got this title, new science, that is inclusive, that's for everyone, where people are celebrated because of their identities, not in spite of them. And I think that that's what's exciting about the future for science. Absolutely, absolutely.

Okay, I kind of want to talk about this and, like, ground this in the present moment. I mean, as you're well aware, there is an onslaught of anti-LGB bills on the table, most targeting trans folks. I mean, what does it feel like to be talking about this exhibit in this present moment? I think, you know, it's a scary moment. And I would say that, like, the one thing about this exhibit is that all of these people hold intersectional identity. So we're really centering people of color who also happen to be queer or trans or gender non-conforming. And so these people are being marginalized along multiple axes of their identity. They're experiencing this marginalization, not just because they're queer,

but because they have these other parts of their identity that make up their whole unique selves. And I think that at this present point in time, the queer and trans community are more under attack than we've been for decades. over 300 bills have been introduced at the state level that are anti-trans or anti-LGBQ. And that's like an exponential rise. It's an entire order of magnitude from where we were at in the entirety of 2018. I think in 2018 there were like under 50 bills introduced at the state level that were similar in substance. And so like it's kind of terrifying. But I think it's also exactly the moment where we should be forefronting identities,

where we should be speaking out and saying, no, I'm here because you need me, you need my identity, you need my perspective, because we're facing major challenges as a global community, as a nation, and my unique identity that I'm bringing to the table is important and needs to be heard, and I need to be able to be my whole self in order to bring those unique perspectives. I'm Maddie Safaya, and this is Science Friday from WNYC Studios. I'm talking with Lauren Esposito, curator of a new exhibit, celebrating queerness in STEM. Lauren, I'm wondering what's been the reaction to this exhibit?

Because it's fairly unique, I think. You know, I think like by and large it's been actually quite kind of amazing. And we are here. We're in San Francisco, right? San Francisco is like a super queer-friendly, queer-inclusive city. And yet this is the first exhibit focused on LGBTQ identities in science that's ever been displayed in a science museum. And so people are coming to San Francisco.

maybe they already live here. They're visiting the public floor with their children as a queer family. And their children are seeing the representation of their parents or of themselves for the very first time in the context of science and understanding that there is a space for them, that it is possible for them to play a part. And the feedback that we've been getting is just like thankfulness, people just really feeling appreciative at being able to see themselves included in the public floor of a science museum, some aspect of their identity, whether that's, being a Black American or a Muslim American or a trans American, their identity is represented here and the stories of other people are being told by the people themselves, which I think is a really important aspect of it. Right. You know, personally, I'm wondering, as somebody who's worked so hard to increase visibility and support of LGBTQA folks in science through this exhibit and 500 queer scientists, what does this feedback mean to you, Lauren? I think, you know, for me, it's like really

touching. I spoke recently at a university, and in this talk, I played a little video that we had created, and the story includes a number of the people that are featured in the exhibit, telling a little bit about their story and their own words and why they think it's so important to put on an exhibit like this. And like a few of the people in the audience cried. Oh, my gosh. That's a lovely. That was like very, I was like, oh, I wasn't, I wasn't ready for it. You know what I mean? Normally different types of tears in scientific talk is. So I like these. Absolutely. Like, normally there's just people weeping because they're like, hypothesis was just rejected.

But in this case, it was people like, just crying kind of tears of joy at being able to see their identities represented and valued. I love that. I love that. Okay, so before I let you go, we have to say you are featured in this exhibit. You study arachnids, spiders, scorpions, that kind of stuff. Tell me, tell me like a cool spider fact or a scorpion fact.

I mean, first I'm going to say, like, it's so embarrassing. to me that I'm featured in this exhibit, but our advisory panel was like, we want you to be in it. And I was like, I'm so, like, I feel weird about that. But at any rate, I am featured in the exhibit. And, okay, so I feel like every time I read anything about spiders or scorpions or arachnid facts from new research, I'm like perpetually amazed. One of my favorite facts that I just learned recently is there's a kind of little spider called a bolus spider. And they're called that because they'd make like a threat of silk and at the end of this thread they put like a glob of glue and then they like swing it around kind of like a lasso spiders are wild spiders are so wild right and they like glob the glue onto like

a moth flying bite but one of the things that they do is they like secrete these chemical odors that mimic moth pheromones so that like male moths out looking for mates like smell the pheromones and are attracted to the spider and then the spider like whips it's globby glue silk out I love that. So they're like false signaling to attract mothmates and then eating them. Wow. There is intent in execution there for sure. All right. Okay. That's all the time we have. Lauren Esposito is a curator of arachnology at the California Academy of Sciences and founder of 500 queer scientists. Lauren, thanks for being here and happy pride, by the way. Happy pride. Thank you always, Maddie.

If you'd like to visit the exhibit, it is open to the public at the California Academy of Science. or you can find it online and even download parts of the exhibit for free to share with your school or community center. If you missed any part of this program or would like to hear it again, subscribe to our podcasts. And if you'd like to say hi, find us on Facebook, Twitter, or Instagram. Send feedback and tell us what you'd like to hear. I was back next week. I'm Maddie Safaya. Have a great weekend.