Science Friday - SIDS Research, Period Tracking Apps, Women And Girls In Science. May 27, 2022, Part 2

Episode Date: May 27, 2022

‘Breakthrough’ In Sudden Infant Death Syndrome Research Is Misleading Last week, headlines made the rounds in online publications and social media that there was a massive breakthrough in research about SIDS: Sudden Infant Death Syndrome. A study out of Australia concluded that babies who died of SIDS had significantly lower levels of an enzyme called BChE. This study was met with cheers by people desperate to understand why SIDS happens. But many experts say we need to pump the brakes on the celebration. While the study may be promising, it was based on a very limited sample—just 26 babies who had died of SIDS. A variety of factors could explain their different levels of BChE, says Dr. Rachel Moon, a professor of pediatrics and SIDS research at the University of Virginia. Moon explains that there are two major hurdles for researchers trying to investigate the causes of SIDS. First, as grieving parents are very unlikely to consent to their deceased child’s use in medical studies, the sample pool for genetic testing of SIDS death is incredibly small. Secondly, there are just very few people who specialize in the syndrome; Dr. Moon suspects there are one hundred or fewer researchers of SIDS in the entire world. She joins guest host John Dankosky to discuss how these factors make it hard for researchers to study why some babies continue to die prematurely.   Period Tracking Apps And Digital Privacy In A Post-Roe World After the leak of the Supreme Court’s pending decision on Roe v. Wade law, digital privacy experts have been raising an alarm about digital privacy. Millions of people use apps to track their menstrual cycles—the popular app Flo has 43 million active users. And Clue, a similar company, says they have 12 million monthly active users. But in recent weeks, many on social media have been urging others to delete their period tracking apps, saying that the data you share on them could be potentially be used against you if abortion becomes criminalized in states across the country. Guest host John Dankosky talks with Laura Lazaro Cabrera, legal officer at Privacy International, about what kinds of data period tracking apps collect, how personal health data can be used in court, and how to protect your digital privacy.   How Can We Inspire The Next Generation Of Female Scientists? The work of pioneering female scientists like Marie Curie and Jane Gooddall have served as an inspiration to many aspiring scientists. But less well-known are the early and mid-career female scientists who are working to answer some of today’s biggest scientific questions. A new book from National Geographic offers kids and tweens a look into the day-to-day lives of women working in the fields of volcanology, biology, anthropology, astronomy, and more. A central theme among the profiles is persistence in the face of obstacles. Producer Shoshannah Buxbaum talks with Clare Fiesler, conservation biologist, National Geographic explorer, and co-author of No Boundaries: 25 Women Explorers and Scientists Share Adventures, Inspiration, and Advice.   Transcripts for each segment will be available the week after the show airs on 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 John Dankoski. Ira Flato is away. If you follow children's health, you may have seen the headlines last week. Reports have a big breakthrough in research about SIDS, sudden infant death syndrome. About 3,500 babies die suddenly and unexpectedly each year in the U.S. A study out of Australia found that babies who died of SIDS had significantly lower levels of an enzyme called B-C-H-E. Now, this study, of course, was met with cheers by people who are desperate to better understand why SIDS happens. But some experts are saying we've got to pump the breaks on this celebration.

SIDS is a devastating situation for parents, and the truth is, there's a lot we don't know about it. While the study's promising, there's more we still need to learn. So joining us here for a reality check on the state of SIDS research is my guest, Dr. Rachel Moon, Professor of Pediatrics and SIDS researcher at the University of Virginia. School of Medicine. She's also chair of the American Academy of Pediatrics Task Force on SIDS. Welcome to Science Friday, Dr. Moon. Thank you for having me. It's great to be here. First, why don't you tell us a bit about the study that came out of Australia. What exactly did it suggest? This study looked at dried blood spots of babies who had died from SIDS, babies who had died

from another cause, and control babies. And what they found was that the serum levels of one enzyme called butylylenesterase was statistically lower in the babies who had died of SIDS. And so this created a huge media and social media flurry. It did create quite a flurry. These headlines were saying things like, this is the breakthrough in SIDS we've been waiting for. We'll have a cure for SIDS. So what's the reality here?

What was your take on this paper? So I think it's an interesting paper. It's a very preliminary result. There were only 26. babies who had died of SIDS who were represented in this study. And even though the levels were statistically lower in those babies, there was a great deal of overlap. So at this point, I don't think that we can use this as a biomarker because if you get one level, you can't make a prediction about whether or not a baby is at higher risk or not because there's just too much overlap.

However, it does remind us that there are neurotransmitters in some babies where there is deficiency or some kind of difference in how the neurotransmitters work and that there is, for many of these babies, some kind of biological predisposition. And then when that baby is placed in a situation where they are experiencing some exphyxia, so that means a lower level of oxygen or a higher level of carbon dioxide, that they may not arouse and they may not wake up to be able to respond appropriately to that stimulus. And so it does remind us that it's not just one thing that causes SIDS, but it's probably a perfect storm of several events happening at once. Yeah. In a minute, I want to talk a little bit more about the research that you do and the other

research that is out there right now. I guess I should ask, though, people did get very excited about this research. In your mind, what caused this excitement? I mean, why were so many people in the media, even in the science media, picking up on this story and saying, oh, my goodness, we may have a breakthrough here. You know, that is a very good question. I think those of us that are working in this area were a little bit surprised at how quickly this gained momentum. And none of us predicted this. I think that there are several reasons. It's such a devastating disease. even though we know more about it than we did 20 or 30 years ago, there's still a lot of mystery left. There are a lot of grieving parents out there, people who have lost their babies before,

and they're still left with this answer of why. And many of them have experienced stigma because a lot of people, there's this perception out there that Sid only happens to people who are bad parents. And it can't happen to me because I'm a blue person. parent. And so then when it does happen to you, then you're treated differently by other people. And so to be able to say, it wasn't anything that I did, but it was something that was innate in my baby, that is really very hopeful for people. And so I think that there's a lot of hope, there's a lot of fear. There's also a lot of, there are a lot of people who don't want to

follow the safe sleep guidelines because they're hard. They're hard to follow. And, And so if we have, you know, if we have a blood test, I can diagnose it, then we can do away with all of that. Well, let's talk about those safe sleep guidelines and some of the work that you do, seemingly on the completely other end of the spectrum here, not having to do with finding a specific biomarkers of what may cause this in babies, but really just applying best practices as far as we know them right now in order to keep kids as safe as possible. What can you tell us about these safe sleep practices? Well, you know, these are pretty much tried and true. I mean, it's not 100%, but they do reduce your risk significantly. So these are things like place your baby on a back in a crib or a bassinet or a place that is flat and with a firm surface. And there should be nothing but the baby in that sleep environment. Breastfeeding is protective. Being in a non-smoking environment, that is also protective.

And using a pacifier is actually. protective as well. So those are kind of, those are the mainstays of the safe sleep guidance that we provide to families. And we know that these things work, but as you say, it's not 100% foolproof. That's right. I mean, you know, so once back sleeping was recommended, the rates of SIDS declined by 50% in the U.S. and in most places around the world that also recommended this. But since 2000, we have have not seen a change in the rate of SIDS. It has not gone down. And these deaths still continue to happen. Part of it is because of unsafe sleep practices, or at least that is contributory. Part of it is also that these babies, many of them have an innate inability to wake up.

There's something going on in their brain stem, and there's been a lot of work done on brainstems and neurotransmitters and arousal, and these babies can't wake up. And so it's this combination of things that contribute to these deaths. So what is the status of research on SIDS right now when it comes to biomarkers of the type that we're talking about from this Australian study, neurotransmitters, the inability of babies to wake up? What's the scope of the research being done right now in the world on SIDS, doctor? There is a lot of working done on the brain stem and looking at neurotransmitters. There's a lot of work being done at Boston Children's by Hannah Kinney and Robin Haynes.

And there's work being done all over the world on this. I say that all over the world, it makes it sound like there are a lot of us doing it. There actually are not that many people doing research in this area. We're a very small community. And so we believe that what happens is that these babies ultimately can't wake up when they need to wake up. And this is likely because there's some kind of a break in the nervous. transmitter connections. There's been a lot of attention on serotonin. There's also been a lot of attention on acetylcholine. These are a couple of the neurotransmitters that there's been a lot of

focus on and there have been some differences in. In terms of biomark or something that you could test for, we actually were hopeful a few years ago because there were some promising signs that looking at serum, blood levels of serotonin might be helpful in identifying which baby. might have an arousal defect or be at higher risk for these deaths. But the latest that I heard, which was earlier this month, it looks like that that is not the case, at least not right now. So at this point, I mean, we're closer than we were 10 years ago, but I would not say that there's going to be a biomarker in three to five years. So what we're left with is doing the things that we know will reduce the risks. And those are the safe sleep practices.

And it's hard to find these biomarkers because of the difficulty in finding tissue samples. It is very difficult to find tissue samples. So, you know, as I mentioned, and as everybody realizes, when your baby dies, it's the worst thing in the world that can happen to you. And so, you know, you've lost your baby. The police are coming to talk to you because they have to investigate this sudden and unexpected death. And so you feel like you're already being stigmatized. There's all of this emotional thing happening to you. And then somebody tells you that they're doing an autopsy, which is routine for

these babies. And they ask you if you want to donate samples that can be saved for research. And you are probably not in the right mind to be able to do that because of all of the stuff that's happening to you that you're overwhelmed with. In every saving, except for one, parental consent is required before tissue samples can be gotten. And in California, which is the one state that does not require parental consent, most medical examiners are very reluctant to get tissue samples without parental consent. And, you know, and that's certainly understandable. So it's very, very difficult to get tissue samples. And it's interesting because if you talk to parents later on, they many times wish that they had said yes and they had given

consent. But at that moment in time, they just couldn't do it. It was just too much for them. You know, obviously 3,500 deaths or more than that, depending on the diagnosis, is a huge number of cases. But even beyond that, every parent in the world who fears for their children, child's safety and tries to follow safe sleep practices, is concerned every day about this happening. This is doctor just such a huge issue. And I guess it just shocks me when you say that there's not that many people like yourself studying this around the world. It shocks me too.

So number one, the media doesn't cover this. And number two, the rates did go down after the back-to-sleep campaign. And so there's this perception that this is a disease that has. gone away. And so it's very difficult to get funding to study this. It's very difficult to find junior people who want to study this because it's hard to get funding. And so it becomes this vicious cycle. But I don't even think there are 100 people of us around the world that are doing this work. And that includes the pathologists, the biochemist, the geneticists, the epidemiologists, the the physiologists, all of these people, I don't even know if there are 100 of us around the world.

That's all the time we have. I'd like to thank our guest. Dr. Rachel Moon is Professor of Pediatrics and a SIDS researcher at the University of Virginia School of Medicine. She's also chair of the American Academy of Pediatrics Task Force on SIDS. Thank you so much for having me. We've got to take a break. When we come back, we're looking into how period tracking apps store and share your data and the role of digital privacy in a post-Rowe versus weight era. Stay with us. This is Science Friday. I'm John Dankoski.

Our next story is a continuation of our coverage of reproductive health and abortion access. This week, we're taking a look at the implications for digital privacy in a post-Roe versus weight era. You may have seen people on social media saying that you should delete apps that help you track your period. What's the concern? Well, the data you share on them could be potentially used against you if abortion becomes criminalized in states across the nation.

And millions of people use these apps to track their menstrual cycles. The app flow says it has 43 million active users. And Clue says they have 12 million. But what kind of data do period tracking apps collect? Who can access this data? How worried should you be about entering your personal health information into an app? Joining me now to answer some of these questions and more is Laura Lazaro Cabrera, Legal Officer at Privacy International, based in London, England.

Welcome to Science Friday, Laura. Thank you very much, John. In 2019, you looked into the privacy practices of period tracking apps, including two of the biggest on the market, those that we mentioned, Clue and Flow. You put in some personal information and then asked for copies of your data back. So what did you find? Well, we not only reviewed Flow and Clue, but we also looked at a range of different peer tracking apps, including Maya but Pakal Tech,

MIA by Mobup Development Limited, and many others. And what we found is that pretty much all the information that we were putting into the app ourselves was then being stored in the company's servers. And so what we saw range from information about our cycle on the date of our last period, as well as information relating to our sexual activity, and information related to our diary entries, which could contain virtually any information that the user would want to put into it. So this data was saved on servers, shared with third parties.

I assume that this is an expectation that the users of these apps, including yourself, didn't have. Exactly. It wasn't all the apps that shared the data with third parties, but a couple of them did, and concerningly, they shared that data with Facebook, and they shared it nearly verbatim. So we would put in the data, and the data would get shared as it was put in with Facebook. Facebook through. We then learned the software development kit that Facebook often makes available to software developers and app developers. Did this surprise you to learn this? Oh, of course. We weren't told. So we downloaded several of these apps through several phones. And of course,

we had a look at the privacy policy, but we did not see the information that virtually all of the data that we would put in would be shared with Facebook and other third parties. We discovered that there was indeed more than one third party that received this information. And it was never made clear to us and certainly not the granularity of data that these other parties would be getting. For people who haven't used these apps before, maybe you can explain what types of data we're talking about here. We're talking about data relating to the entirety of the menstrual cycle. So you'll put in the day of the first day of your period. You'll put in the last day of your period. you'll also add additional information such as your moods, how you're feeling on a particular

day, whether or not you're experiencing any cramping. And indeed, some pre-trucking apps make available the option of the user declaring at the outset whether or not they're looking to get pregnant because it can also be used to monitor how your cycle is doing and how likely you are to get pregnant in the near or short future. So some of this is quantitative data, but some of it's very qualitative. It's people's moods. It's how people's moods. It's how people are feeling about this particular moment in their lives. Absolutely. Explain exactly what happens when you enter some personal health information into a period tracking app. And I understand each app works differently, but maybe you could give us an overview of what happens exactly.

Yes. So things will happen in one of two ways. Either the data used by the app is stored locally. That means that it is stored on your device or it is stored in the company servers. The moment that you put information in to the app, that's considered an event. And so information of that event will be recorded by the company's servers. If indeed that's how the app is built in, it may well be that the app is built in a way where all the information is stored locally. Indeed, that would be a deal for privacy purposes. But most of the time, of course, it will get shared with the servers.

And that is tied to the app's functionality itself. And that is a reason that peer-attacking apps rely on when stating that they share data with third parties or indeed that they store the data and their own servers. after your findings were published back in 2019, two of the big period of tracking apps actually changed their data privacy policies. Tell us about what changes they made. So one of the big changes that we were really happy to see was by Maya. So Maya changed its policies and changed the way the app worked by removing Facebook's core

software development kits, which was a primary way in which data was shared with Facebook. there were other types of data that were still shared with Facebook after these changes were introduced, but at least the user was given the opportunity to consent before the data sharing actually happened. And that is a big change insofar as the users now have a better knowledge, who's likely to get the data, and they are at least offered the option not to share it with this other company and still use and enjoy the benefits of the app. What do we know about what Facebook has done with data that it's gotten from these? apps? Well, sadly, we don't know very much, and that's pretty much what we always say about Facebook. We just don't know enough. There isn't enough transparency about the ways in which this

data is handled. The reality is that the data gets shared with Facebook, whether or not you have an account or whether or not you are logged into any of their products, if the software development kit is allowed to operate in that way. And so at the time we carried out this research, the default implementation of the Facebook software development kit was designed to automatically transmit event data to Facebook. However, Facebook places the sole responsibility on app developers to ensure that they have the law for right to collect, use, and share people's data before providing Facebook with any data. Once I get to Facebook, there is very little clarity as to what happens with that data, whether it is combined or aggregated with other sources

of data that Facebook has at its disposal, which includes, of course, all the advertisers that might upload data to Facebook and your own activity on the app or the platform if you use it, et cetera, et cetera. If you look at Facebook's privacy policy, they do acknowledge that they receive information for third parties, and they do receive that information whether or not that third party collected the information online or offline. But then again, we don't know what sort of due diligence Facebook applies to make sure that the data uploader, which in the...

this case would be the peer tracking apps. We don't know how they've been made to comply with data protection laws enforced. We don't know how Facebook exercises that oversight in a way that they can be sure that people's privacy rights are preserved. So let's get to the crux of this. In a post-Rowe versus Wade era in the U.S. where abortion is banned or criminalized in several states in the U.S. would Facebook likely provide user data to those who are seeking it, law enforcement officials or others?

I don't know that it's likely, but it's certainly possible. And in the past, we've seen lots of stories about not just Facebook or meta or many other big tech companies sharing data with law enforcement of their request. In practice, there is very little a company can do to refuse to comply. And certainly there are consequences. And recently, earlier in 2022, we've been saw an example where hackers impersonated law enforcement authorities and submitted data requests. And Apple and META ended up providing subscriber data, own response to a fake law enforcement request.

So this does happen. And one could even say that when these law enforcement requests arrive, there isn't much due diligence that is applied to see whether they come from legitimate authorities or indeed if they are legitimate. What are the concerns in terms of law enforcement getting access to other third party data? We know that the U.S. government, for instance, has purchased data sets before in the context of immigration control enforcement. So if we're talking about the data marketplace, it's not impossible for the U.S. government to be accessing data brokers' data sets to get more information about particular individuals. Are there certain apps that provide period tracking services that aren't,

more secure that you found than others? Well, we've always been uncomfortable about reaching that sort of conclusion because that, in a way, signifies full access, full transparency and full understanding of an app, and it's very hard to achieve that. However, we feel that, of course, the legal framework under which an app operates is an point in point of reference, because even if it does not prevent wrongdoing in the first place, at least it provides individual users with a remedy or some accountability, if something goes wrong if there is any data misuse.

And since we're based in London, it's worth saying that for us, the general data protection regulation, which covers all of Europe, is a primary reference. So that is an important thing for people to bear in mind. What sort of legal framework does this app fall under? Where is it headquartered or at servers located? Those are all relevant questions to ascertaining which law will apply. And then users are able to decide whether or not they're happy

with the level of protections provided by the legal system. or whether they're not. I mean, how much does it matter where an app company is headquartered, whether it's in the EU or in the U.S. or someplace else? Well, the key thing here is the legal regime that applies. So if you're headquartered in the EU, it's very likely that you will fall under the general data protection regulation. And that means that additional responsibilities and obligations will apply on peer

tracking apps or companies in general, whether they be data processors or data controllers. And not just that, but the GDPR also imposes additional obligations and safeguards when it comes to health data at large. So it doesn't matter so much who's doing the processing of the information, what matters is the type of data that has been shared and additional requirements apply if that data is considered to be sensitive. And of course, health data is considered to be sensitive under GDPR. If you're just joining us, I'm talking with Laura Lozaro Cabrera, legal officer at Privacy International, about data privacy. in a post-Roe versus Wade world. This is Science Friday from WNYC Studios. So looping back to these legal questions,

if a court was successfully able to acquire your personal data from your period of tracking app or some third party that it gives the data to, would people be able to know if you were, say, pregnant or if you had a miscarriage? The way that law enforcement can access to this data is not only if you directly disclosed on the app, Indeed, it's possible for people to say, to type in, for instance, on the diary function,

I had a miscarriage yesterday, or I had a continuous abortion, et cetera, et cetera. That's only one way, but it's not the only way. For example, it will be possible for some of the data processed by these apps, not necessarily peer tracking apps, but also others, which could be construed as a proxy for someone having been pregnant or someone having undergone a termination of their pregnancy. So proxy data will refer to data from which, other data can be inferred, and these links aren't always obvious.

And along those lines, are all the other ways that you might communicate about your reproductive health using Google to search for abortion providers or texting friends and family about your concerns? Are these things that can be used against you? Absolutely. I mean, in and of themselves, perhaps they wouldn't be able to be used as conclusive evidence that a crime has taken place if indeed abortion goes on to be criminalized. But then again, taking as a whole and looked at in light of other coexisting information, then it might be enough to then prove that someone has undergone an abortion in circumstances where it was prohibited. And indeed, we know that browsing history has been used as evidence

of legal proceedings before. And in particular in the U.S., there are federal offenses that can be incurred if a person decides to delete their browsing history all of a sudden. So all of these are relevant considerations for people to bear in mind. How can people better protect their reproductive health data? I mean, should they, as we said at the top, be deleting these period-tracking apps altogether? I wouldn't advise for people to delete their peer tracking apps before reading the privacy policy in full. And if they do read privacy policies of peer tracking apps at large, they may well discover that once you stop engaging with the app or once you even delete the app, that does not mean that data stops being shared or that you're data is deleted. So what you may want to do instead is after you look at the privacy policy,

figure out what the process is for deleting data and trigger that process. And sometimes it won't be as easy as pressing a button. Sometimes it will involve finding out an email address, then send an email and explicitly requesting for data to be deleted. So I would urge people before they stop in engagement with the app, just consider what you need to do to make sure that that app is no longer processing your data. But honestly, just reading these privacy policies is enough to give you a headache. I mean, if you don't have a legal background, it's kind of hard to parse what exactly these privacy policies are saying. That's absolutely correct. And even if you do have a legal background, it's still very difficult to try and make sense of exactly what data is being shared with whom. And in general, privacy policies

are being kept vague enough that you can't be 100% sure of what's happening with your data. That being said, there is, I think, a responsibility on companies in general, but now particularly on peer tracking apps, companies, considering the current context in the U.S., to make sure that their privacy policies are easy to access, that they're readable, that they're understandable, particularly understandable by their own audience. Do you think that questions like these, specifically surrounding some of the reproductive health questions that have come up just now, do you think that we're going to, do you think that? that this is going to fundamentally change how we think about medical privacy overall in the United States? Definitely. Health data is perceived as something relevant only to hospitals and health care facilities in general. And we associate health data with professional healthcare services, which means that there is a baseline level of trust. And that's because we subsume the concept of privacy and data protection under the broader patient doctor, confidentiality doctrine. And it's important

to distinguish those concepts. Doctor-patient confidentiality is grounded in the relationship you have with a regulated health service provider, but data protection is grounded in the nature of the data, regardless of who you share it with. And I believe that the current conversation happening right now will help people to realize that they have a lot more agency in this process that they thought. But that also means that there's a lot more responsibility and that we, to an extent, have to hold ourselves accountable for the data that we share with others.

Is there a policy solution that you think the United States needs to adopt in order to address some of these issues? And is it a is it purely a federal policy solution as opposed to state by state, which is how we are tackling these other reproductive health issues? It's important to have some consistency and it's important to have, let's say, a baseline level of protection for privacy and data protection at large, which could be achieved in the form of federal regulation. And one way to do it would be to put the type of data that is being shared front and center instead of making any regulation or oversight subject to formal accreditation or for my licensing requirements. And I know that to be the case for some states in the U.S. where additional data protection obligations apply, that's often tied to the nature of the health service provider. So again, it's grounded in the relationship that a patient may have with a service provider

and not so much grounded in the type of data that's being shared. If you put health data front and center or sensitive data in general front and center, then that means that people can be protected and their rights can be exercised regardless of who gets the data. Laura Lozaro Cabrera is legal officer at Privacy International based in London, England. Thank you so much for your time. I really appreciate it. Thank you so much, John.

We have to take a quick break. And when we come back, a conversation about encouraging girls to become scientists and why it's important to talk about the highs and the lows that go along with a job. Stay with us. This is Science Friday. I'm John Dankoski. When you think about pioneering female scientists, you may have figures like Marie Curie or Jane Goodall in mind. But what about the female scientists who are working to answer today's biggest scientific questions? A new book from National Geographic tells the story of early and mid-career female scientists in many disciplines around the globe. Their stories focus on the ups and downs of what it's really like to be a scientist today.

It's written for kids and tweens and it's called No Boundaries. 25 women explorers and scientists share adventures, inspiration, and advice. Joining me now is producer Shoshana Bucksbaum, who had a chance to talk with one of the books co-authors, Claire Feasler, a conservation biologist and a National Geographic Explorer. Hi, Shoshana. Hey, John. So what was it about this book that really resonated with you? Yeah, so I'm obviously a big fan of science. After all, I work here at Science Friday. But I can't say that as a kid I saw myself becoming a scientist or even a science journalist for that matter. That all came together later. I realized that many of my interests, health, animals, the environment were all actually, you guessed it, science. I found it super interesting that many of the female scientists profiled on the book also.

didn't originally see themselves as having a career in science. So I was curious about what motivated the book's co-author, Claire Feasler, to write it. She told me about how it all started when she was reading an issue of a National Geographic magazine all the way back in 2013. The topic was bringing species back from extinction, kind of using biomedical technology. And I got to like a page where it kind of showed a team of scientists working on this topic, and it seemed to be like all men. So I went through and I decided to count how many male scientists versus female scientists were quoted in this fascinating issue of National Geographic. And I could only find four women quoted out of like 35 scientists.

And so that's about 10%. And that's when I realized like, oh, this is a problem. You know? And from there, I just started digging more. I spoke to a couple different of the other kind of younger National Geographic explorers and grantees about this issue. And I was able to get about a dozen of us to pick up other issues of National Geographic and start counting the number of men versus female scientists quoted and featured and photographed. And in just like the span of a month or two, we together read 34 issues of National Geographic between the October 2012 issue to the July 2015 issue. And what we found is that across all those issues, there were

1,106 experts featured or quoted. And 205 of those were women. So that's about 19%. And the numbers were so shocking that this was not just, you know, a problem for one issue, but basically all the issues that I asked National Geographic if I could present, do a presentation about this, and they let me. So I did. And I think they were aware of the problem. And after the presentation, a fellow explorer came up to me and was like, we should do something about this. And so first, we got a grant to make a documentary about female explorers. And then from there, National Geographic kind of thought it was a good idea for us to write a children's book. And that's how this book came about.

Yeah, I mean, that's quite a journey getting to this book. So why did you choose to profile living female scientists versus historical figures like Marie Curie? I mean, I think a lot of us tend to, you know, look back to the past for inspiration, for heroes. but why is it so important for you to say like, okay, we're going to profile people doing the work now? I think for us, it was about being able to show a work in progress. And when you look at the careers of Marie Curie and Jane Goodall, they've already kind of had their, you know, art to success. And when they do talk about failures or you read about it in a book, you're like, okay, but, you know, they overcame it and look, they're the most famous scientists in history.

And we wanted to really dwell on those issues of obstacles and challenges and how people overcame them. And so, you know, interviewing women that were still in the early or middle parts of their career seemed like the best way to do that because most of the women we talked to were still working through these issues and had answers, but really we're like still wrestling with them. And I think that that made these women more relatable to me. And I thought, you know, they'll probably make it more relatable to kids, too.

I think one of the really special things about the book is the little details that you chose to include. There's this section in each profile. It's called must-haves, and it's usually a tool or, you know, something that scientists bring out in the field with them. And I especially loved that the astronomer, Munaza Alam, she mentioned that she always brings lip balm and hand cream because when she goes up to these big telescopes. They're in really dry areas. And so to me, that was just a little detail that I could see myself as a little kid really glomming on to. Why did you decide to include these kinds of little mundane details about like the things you put in your bag when you're heading out the door to do science? Well, I've done quite a bit of field work myself and these little

details about what women think about before they go into the field. Yes, they're thinking about these big questions of like, is their life on other planets? But they're also thinking about like, how dry will my skin get and will I be comfortable? You know, how cold will this place get and will I be comfortable? And, you know, being comfortable in the field, comfortable enough to do the work you need to do is important. Anyone who says otherwise is lying. Yeah, so I just love the fact that Munasala, she goes to these telescopes that are like high in the deserts of Chile, which is very, very dry. And, you know, if your skin is cracking and your lips hurt, like, it's going to be hard to like find out the atmospheres of other oxo planets in our universe, you know. Maybe some critics would be like, oh, that's kind of showing women as like too feminine or something. But no, these are real stories of women. This is what they would think about. There's another woman. who studies plesiasaurus, which are kind of like ocean reptiles of the past. And her name is Aubrey Roberts. And she has to sleep in tents in Slavabad, which is an island in the Arctic for

months. And it's very cold and uncomfortable. She makes sure she brings a pillow because she's going to be cold and wet. But if her head is comfortable, like that can be a saving grace. Bringing a pillow into the field, bringing shapsic into the field are these little details that humanize them. You know, Jane Goodall is just so impressive. And she's almost otherworldly in her impressiveness that maybe she can seem like out of reach. We wanted these women to be within reach for young girls, young kids in general. Yeah, yeah. And speaking of primates, there's a quote from primatologist Patricia Chaple write some advice in the book that stuck with me. And it says there will be people who will tell you, don't do this or you can't do that. They're just trying to be practical.

They don't mean any harm. But sometimes you just have to be insistent about what it is you really want to do. I think persistence is definitely a through line in this book. Why was that something that you felt like was important to thread through much of these stories? Persistence. is essentially the one-word summary of the entire 160-page book. I'm glad I landed on it then. So thank you for validating my mission. Having spoken and interviewed these 25 women in preparing for this book, that is the common theme,

and that much more so than natural talent, much more so than, you know, fancy degrees. persistence truly is the secret sauce to all of these women's achievements. And I think that that is not stressed enough to young girls. I think it's like excellence in math and science and going to college and all those things are important. The idea that persistence can take you far, I don't think is really stressed enough to young girls. I think perfectionism is stressed. And that's like the complete opposite message I want to give to young girls trying to get to the place where I am and other women in this book are.

Who cares about perfectionism? Like, persistence is where it's at. Yeah, yeah. And this through line of persistence, I think, was really highlighted in Egyptologist Nora Shockey's story. Can you tell me a little bit about her challenges in getting her research completed? She was faced with a lot of obstacles

in terms of getting her research approved and moving forward. Nora's story is a really special story because she is so willing to talk about the importance of persistence in the context of failure. And we included her story in this book specifically because she wanted to talk about that enthusiastically. She's an Egyptologist and she studies cultures of the past in Egypt. And there's this one site that she had researched for years that she had her heart set on. And then she couldn't go there because of just permitting and bureaucracy and red tape. And so she was just like, okay, we'll go to this other spot. We'll make it work.

And she just pivoted and made it work. And I don't think, you know, it was perfect. But she completed it. And she made these really fantastic discoveries about jewelry that women were wearing at the time who were like not of the noble class. And she was able to make a difference still in her field, despite kind of an awareness. way failing at the onset. And I mean, I think this book, it's sort of refreshingly not a girl power message in a sense. Like, I'm a 90s school and I remember getting a lot of that messaging of like, girls can do it too. But this book is obviously encouraging girls to go into science, but it's very

much a, this is exciting stuff that you can do. And this is what it'll take to do that. Was that a deliberate choice of how you framed these stories and how you put? put the book together. 100% that was a deliberate choice. We did not want the phase girl power anywhere in our book. For me, writing this book, the message was not, you can do it too. It was more like women make a difference, but there are often a lot of hard things that they have to overcome specifically because they're women.

And these are how 25 women are overcoming them. And you'll find your own way and we'll have your back. We have something in common that we both grew up in New Jersey. We did both grow up in New Jersey. New Jersey is America's best kept secret. Yes, thank you. I'm glad we have that on the record. But it's a very inspiring place. There's plenty of nature, forest, beaches, lakes, wildlife, especially some good birds. So what in your wonderful Jersey childhood sparked your interest in nature and in science, ultimately? I think the short answer to that is growing up near the ocean obviously inspired me and made me curious and helped me think of big questions. And I'm now a marine ecologist. I study ocean ecosystems and how climate change is threatening them. But the longer answer is that I was interested in how these ocean ecosystems changed because, you know, New Jersey is one of the greatest ocean restoration. success stories, believe it or not. When I was growing up in the 80s, there was a lot of pollution,

specifically medical waste. There was this specific instance called the syringe tide where the needles were washing up on the beaches of New Jersey. And I remember that I was a kid. I was about three or four years old. And despite us living, you know, right near the beach, we couldn't even go for two summers. Fast forward 20 years later. And I was a beach lifeguard in my hometown. And I would be, kayaking in the morning with dolphins, I would see humpback whales spouting off the jetty. I would see all sorts of fish and the marine life had really rebounded. And that gave me hope. I think people who don't observe that change can fall into despair about the state of our planet.

But I mean, the formative experience in my life was the opposite, that we can go from absolute ruin to a restored ecosystem. I'm Shoshana Bucksbaum and I'm talking with National Geographic Explorer, Claire Feasler. This is Science Friday from WNYC Studios. You didn't actually originally imagine yourself becoming a scientist, right? That's correct. Yeah, that's correct. Even though you sort of grew up near the beach, saw this revitalization happen, were interested in marine life, why didn't you see yourself becoming a scientist when you got older?

Well, I think that I had a vision in my mind of what a scientist should be, which is like someone in a white lab coat, like locked in a laboratory, not talking to anybody. And so it was really these kind of stereotypes that I think prevented me from seeing myself in that role. And I remember when I graduated from college, I had even worked in a lab and still couldn't envision myself. doing it as a career. And so when I graduated, I actually applied for a job at National Geographic. And I ended up getting a job in their filmmaking department. And for about two years, I helped take scientists stories and turn them into scripts for TV shows. And I was able to meet so many scientists who were outgoing and were jovial and making jokes and had these big ideas. And we're not stuck in a lab. And that made me realize, like, oh, okay, like, I have no idea what it means

to be a scientist. And frankly, I can make it my own thing. So these people did. And since then, I've skirted between these careers of media and science. And this book was kind of just a way of taking everything I've learned from being in the science world and using storytelling to report back out to the real world of what it's like. And I want to end on this final question of what would this book meant to you if you had it when you were a kid? Ah, very good question. Well, in the introduction of this book, my co-author Gabby Salazar and I write, you know, we wrote this book because it's a book we were, we had when we were kids.

And that's true. I don't know. I don't know what sort of difference it would have made. I probably would still be here, but I probably would have gotten to this place of my life earlier. I just hope kids enjoy it and they see the message of persistence. and representation that I just didn't. I want that for them. This has been a really wonderful conversation. Thank you so much for taking the time to be

on Science Friday. Thank you. I'm honored to be on Science Friday, especially with a fellow New Jerseyan. And it was a joy speaking about this book. Claire Feasler is a conservation biologist, National Geographic Explorer, Smithsonian Fellow, and co-author of No Boundaries, 25 women explorers and scientists share adventures, inspiration, and advice. For Science Friday, I'm Shoshana Bucksbaum. Thanks so much, Shoshana. If you want to learn more about scientists' profile in this book, go to sciencefriiday.com slash no boundaries.

You can read mammologist and outreach scientist Danielle Lee's profile. She'll be on the show in the coming weeks. If you missed any part of this program or you'd like to hear it again, you can subscribe to our podcasts, or you can ask your smart speaker to play Science Friday. You know, every day is now Science Friday. Say hi to us on social media, Facebook, Twitter, Instagram, or email us.

The address is SciFri at ScienceFriday.com. Send feedback and tell us what you'd like us to cover too. I'm John Bancoski. Ira Flato is back next week.