Tech Talk: Data Privacy After Roe v. Wade — Talking Tech w/ Alex Givens at SXSW 2023
The overturning of Roe v. Wade is a watershed moment for the privacy of people seeking reproductive care.<br><br>A person’s browser history, search history, location and private messages can be used by law enforcement or private citizens to pursue people who are suspected of having or aiding an abortion. When people’s most private digital information can be used against them, can tech companies change their practices to better protect their users’ privacy? As some states try to outlaw websites that tell people how to access abortion care, can advocates ensure that reliable health information remains online?<br><br>In this episode, you will hear from Alexandra Givens, President and CEO of the Center for Democracy and Technology (CDT); Cecile Richards, former President of Planned Parenthood; and Nabiha Syed, President of The Markup, as they discuss ways advocates are working to protect users’ privacy and access to information at this critical moment for reproductive rights.<br><br>More details about this 2023 SXSW featured session: https://cdt.org/event/sxsw-featured-session-data-privacy-after-roe-v-wade/<br><br>More on our host, Jamal: bit.ly/cdtjamal<br>More on Alexandra: https://twitter.com/AlexReeveGivens<br>More on Cecile: https://twitter.com/CecileRichards<br>More on Nabiha: https://twitter.com/nabihasyed<br><br>(CDT relies on the generosity of donors like you. If you enjoyed this episode of Tech Talk, you can support it and our work at CDT by going to cdt.org/techtalk. Thank you for putting democracy and individual rights at the center of the digital revolution.)<br><br>Attribution: sounds used from Psykophobia, Taira Komori, BenKoning, Zabuhailo, bloomypetal, guitarguy1985, bmusic92, and offthesky of freesound.org.
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Transcript
Welcome to Tech Talk. Bye.
CT. Tea.
Welcome to CDT's Tech Talk, where we dish on tech and Internet policy while also explaining what these policies mean to our daily lives. I'm Jamal Magby, and it's time to talk tech. The overturning of Roe versus Wade is a watershed moment for the privacy of people seeking reproductive care. A person's browser history, search history, location, and private messages can be used by law enforcement or private citizens to pursue people who are suspected of having or aiding an abortion. When people's most private digital information can be used against them, can tech companies change their practices to better protect users' privacy? As some states try to outlaw websites that tell people how to access abortion care, can advocates ensure that reliable health information remains online? In this episode, you will hear from Alex Gibbons, president and CEO for the Center for Democracy and Technology, Cecile Richards, former president of Planned Parenthood, and Abiha Syed, president of The Markup, as they discuss ways advocates are working to protect users' privacy and access to information at this critical moment for reproductive rights.
And now, please join me in welcoming to the stage, Alexandra Reeve Givens, Cecile Richards, and Nabiya Syed. Oh, wow. It's a full house. So I don't know about you, but one thing I love about coming to South By is that it's a place where you come to get a glimpse of the future. It's optimistic. It's exciting. It's innovative. And none of those are words that I would use to describe what the last year has felt like for anyone who cares about reproductive privacy. In fact, I would use words like depressing, confusing, messy, which is why I'm so excited to be here on this panel today with two people who will help us understand what is the lay of the land and what are the reasons for a bit of optimism, what are advocates doing on the ground to make sure that we can ensure reproductive rights for everyone in this country, there are reasons to be optimistic, and, you know, at least get to work. So I'm gonna be Hezea, and I'm the CEO of the Markup, and I am joined here with Cecile Richards of Planned Parenthood and Supermajority, and Alex Reeve Givens from the Center for Technology and Technology. So, Cecile, I will kick it off with you. What is the experience of just being an everyday woman trying to get an abortion today in The United States?
Well, it's great to be here with you. It's great to be back home in Austin. Although, I will say this is probably the worst state in the country to be if you're someone looking to access, safe and legal abortion. It's, as we know, it's been it was banned here effectively more than a year ago. And sort of what I see day in, day out here is sort of the fear, and the criminalization of everyday people. In fact, there's a story I know we may talk about that just broke today, about that very topic. So it's it's pretty grim. So it hasn't been a year since the Dobbs decision, less than a year, but a third of, women in this country live in a place where they can no longer access safe and legal abortion for the most part, and that number's growing. Obviously, you know, we we saw this week that Florida is now attempting to essentially have a almost full out ban, and, it feels like it's it's continuing to grow. The other thing I would point out is it's not only that you can't access safe and legal abortion, as I think some people may have read the story that was in the New York Times this week of of the five women that sued the state of Texas. Even in states where there is some type of exception, there really is no access to abortion. It is extremely difficult to, to get, and because of course medical providers are terrified of losing their license, of being, put in jail. And so I think the other piece of this, which is more than we can talk about today, but is important to remember, is that we used to talk about that there were going to be abortion deserts in this country. There's going to be OBGYN deserts in this country. I think it's going to, you know, increasingly, I'm in Louisiana now and where women, you know, are having a hard time even getting miscarriage support from their local hospitals. They are, have a hard time getting even prenatal care because of the fear that the medical profession has over, really being involved with anyone who's pregnant, to be honest.
That's terrifying. Alex, how have technologies really changed the landscape from where we were in fifty years ago when we were having these discussions about reproductive rights? How does this affect sort of prosecutions, the chilling effect that we're seeing, on the ground?
Yeah. It's a great question. And there's a reason why we're having a panel on this at South by this year, which is in the world today, when we look at the type of evidence that can be used in prosecutions or that women have to worry about when they're thinking about accessing reproductive care, there is a big angle based on the sheer amount of information that we share with our phones and with other technology providers in the course of our daily lives. And so we look now at the types of vulnerabilities and vectors, and it's things like your online search history, your browsing history, your private messages with friends or with a loved one or with a parent trying to access information, your location information, which isn't only just gathered by your cell phone provider but by many different apps on your phones depending on what the settings are in their personal privacy practices. And all of those now can be up for grabs. That sometimes sounds like a little bit of melodrama, but really we've actually already seen prosecutions where this type of evidence is being used. We saw them before the Dobbs decision when people were being prosecuted for their pregnancy outcomes where, for example, people's, online search history and browsing history was used by prosecutors. Or even last summer, many of you might remember the Nebraska case of a mother who was prosecuted, brought criminal charges for helping her daughter access abortion medication. And the evidence that was used was their, Facebook Messenger messages, which they thought were completely private. A mom helping a daughter in one of the hardest moments of her life, and that was used as evidence in a crime as well. So it's a new landscape, and we need to think about new interventions to address it.
Cecile, just before we came on stage, you were telling us about a story that broke not even an hour ago that's an example of just how
precarious your digital communications can be. Do you wanna share with the group? Right. Well, I mean, it's it is just breaking. So, it's hard I I and I don't wanna get any of the facts wrong, but essentially, an ex husband of a, woman who terminated her pregnancy is suing, three people that he alleges, assisted her in accessing medication abortion and is using, screenshots of their conversation online. So it's it's very topical to what we are dealing with here today. I think it's an illustration of how terrifying it is to live in a state where essentially anyone can be accused of aiding and abetting a person who is trying to access health care that frankly should be their legal right. And I think, you know, one of the sort of the the pieces of all this to me is the chilling effect that these kinds of, lawsuits and criminal actions are going to have on people who are already terrified. We know that the surge of people looking for information about abortion online, which I know we'll talk about here today. It's been so intense since since the Dobbs decision, but there are there are definitely people who are afraid of even searching, for information. So, you know, you're kind of caught, but you're you're caught both ways. You can't talk to anyone without fear of them being criminally liable. And if you can't go online and know that what you're what you are searching for can't be discovered by the authorities, it really leaves people in a very desperate situation.
Yeah. It's you know, there's the the chilling effects from the issues that you know about. And then there's the things that we don't know about. Right? Or the the public generally doesn't know about. And one thing that comes to mind is I think that we're in the middle of a paradigm shift that we're really seeing here. Right? Where there was a universe, and for the folks that run companies in this room, this will be familiar to you, where data is the new oil. Right? It was to your benefit to collect all of the data you possibly could because it would help you serve your audience. It would help you figure out how to provide care. It would figure out help you understand your business analytics. And we're moving into a universe where data is not the new oil. It's uranium. Right? It's something that's actually quite dangerous if it's being mishandled, if it's not being stored correctly. And I think, you know, we have these data brokers who exist in the landscape who are hungry, hungry hippo ing up data from everywhere they can, selling it, and making it available to law enforcement. Right? So even as and that is happening from things as innocent as going to a supermarket, you know, online supermarket website and buying a pregnancy test, which is a story that the markup wrote about just a couple of weeks ago. And I think, you know, putting on that that perspective of companies need to do more, need to do something to be aware that the data is actually putting your customers, your consumers, your audience at risk is really important. And so, Alex, I might ask you,
you know, what should the businesses be thinking about these days? So this is one of the things that we think about a lot. So I run a nonprofit based in DC called the Center for Democracy and Technology, and we have many different strategies. We advocate to policy makers. We get involved in the courts, but we also spend a lot of time working directly with companies because in this setting, they really do have a lot of control. And one of the things that we are urging them to do, and we've created a task force of repo rights groups and health data privacy experts and leading folks from some of these companies, is think about how to reduce the amount of information that they have. And the reason why we need to think about reduction is that when they get lawful process from a prosecutor, it can be very hard for them to ignore those requests. Right? The legal compliance department gets involved. And so we need to make sure that they handle those law enforcement requests responsibly, that they're pushing back on fishing expeditions, for example. We can have long conversations about geofence warrants and some of the really broad tools that law enforcement might be able to pursue. But really, if the companies don't wanna be in the horribly uncomfortable position of handing over their customers' data for prosecutions based on this really controversial area of the law, they need to hold back on the amount of information that they're gathering. That's what they're collecting. It's how long they're storing it. It's who they're sharing it with if they are feeding it into the data broker ecosystem. Those are all incredibly important places for companies to be examining their processes, really taking stock of how they're contributing to this loose way in which people's data is used today, in which it could be used in prosecutions too.
Yeah. Go ahead. I mean, it just seems interesting because in your I think your your, metaphor, if it is, is is perfect because it's true, all across the healthcare space is that data is being collected that is not even necessarily important and are being used. And I think that my, one of my favorite examples is that, you know, I think Walgreens required during the, to get a COVID vaccine, they asked you 25 questions. Not that I want to pick on Walgreens today just in particular, but it just seems kind of appropriate that, you know, they're asking you 25 questions just to find out, oh, they don't have any vaccine for you. So, I think is a good example of how I think this paradigm shift is right. To say, what is the least amount of information you need, to be able to provide, to provide the product or care that someone needs? And I think for all of us, and I think this is true on the in the advocacy side too, we have to be looking at the same question. Right? What is it we are tracking? Why are we doing that? And are we putting people at risk?
I mean, one group for whom I think this is really hard, it's one thing for me to say that Google and Facebook should be encrypting messages and doing other things to reduce how much they gather, but it is the health care providers themselves. Right? And this is everything from abortion providers to the great online websites that help just give people access to information about what their needs might be. And actually, if I can turn the question back on you, this is an area that the markup has done incredible reporting in to show just how easy it is for those providers to be handing over information to the data system without even necessarily realizing it. Yeah. Absolutely. I think they don't realize. Right? I think if you're a health provider,
you know that holding patient data, patient records behind, you know, behind an intake form in your own servers, you know that you have to protect that. Right? But what the markup did was the markup looked at a variety of hospital websites, and found that 33 of Newsweek's top 100 hospitals had intake forms that would get you information on what are your prescriptions, what are your healthcare concerns, why are you looking for a doctor today. And those intake forms, right, at the very front so early in your patient journey, those websites had tracking pixels on them. So everything you were putting into that intake form to get basic care was actually being transmitted to Facebook. And so we're seeing class action litigation result as, from that. We're seeing regulatory change and commentary coming out of that. But, again, when we called it out, we the health care providers, the hospitals changed their practices right away. Of the 33, 28, I think within a couple of days, took it off because no one's trying to be evil. Well, I shouldn't say no one. The hospitals are not trying to be evil. They just don't know because it's very different than the landscape of and the moments in which they think about privacy. Right? And I think, you know, to to continue to dig into what companies can do, Alex, I wanna ask you about geofence warrants and other things. Because I think for a lot of smaller companies, as you say, the Googles and the Facebooks, the big companies in the world, they have legal departments. They have compliance departments. If you're a small start up and you don't even have a lawyer, and I say this like as a lawyer, you how do you even know what to do when law enforcement calls you and says, I need you to hand this over?
How do people know where to go or how to push back? Yeah. It's incredibly hard. And, again, this is really an education moment, not least because law enforcement aren't always that specific in explaining the basis for the request that they're making. And so when do people even know that there's an ethical reason they should push back? Often what we're seeing is prosecutors framing these as child endangerment cases, for example, or child abuse cases. And of course, that's an incredibly sympathetic framing that a company is gonna want to to engage with. So So one of the things that we spend time educating small businesses in particular around is the need to insist on valid legal process. Right? It if an investigator sends you an email asking for a customer's information, you don't comply with that. Right? We're talking about court ordered warrants. Like, this is where we need to make sure that the Fourth Amendment, people's constitutional rights are actually respected. But there's a huge education deficit to be had there about educating businesses that they should push back, that they are justified to push back. Geofence warrants, I think, are worth a particular conversation. So geofence warrants are when law enforcement try and figure out who was in a particular area at a particular time. So in particular, companies that have access to location data are ripe to receive these types of requests. Companies are pushing back. There has been litigation about this and numerous cases now have found that geofence warrants are unconstitutional fishing expeditions, that law enforcement needs to be much more specific when they're trying to get information about a person, that they really have to establish a reason for their case, not just that someone was in a particular area at a particular time.
But many people don't know that, and they don't know to push back. So the education is really important here. I think that's such an important thing to underscore, because the real politic of how this shakes out, how I've seen it as a defense lawyer, is someone just sends you something and scares you into saying, well, you need to respond to this in twenty four hours or else. And not everyone's tangled with law enforcement before. So the education moment is huge, and I imagine it brings up many questions for people in the audience. So as a reminder, you can ask questions in the South by app. They'll come up for us on the screen right here, and we will be taking your questions, with the time that we have left at the end. And so, you know, Alex, I I wanna ask, you know, there's there's one aspect of this which is saying, what can companies do? What can individuals at these companies do? What can legislators do? What is happening on the legislative front?
Yeah. So there's a lot happening. And you can look at it from slightly different angles. I think the first is to start with that theme we talked about around data minimization, that we just really need to be more careful and more thoughtful about how much sensitive personal information, whether it's about reproductive care or mental health care or many other issues, we need to be much more responsible in how that is collected, used, and shared. And there there is good legislation moving. The most notable has been a bipartisan effort called the American Data Privacy and Protection Act. And what's so important about this is that it's not just focused on reproductive care, it's a bipartisan bill that recognizes all of these different ways in which people's data needs to be protected, including sensitive health information. So what we need really is baseline federal privacy protection to help reduce the amount that is out there. Then when you move over and have a separate conversation looking on the reproductive front, there have been efforts to think about reasonable limits on law enforcement access to data broker information, for example. And then in the states, a growing effort by a number of states, California has led the way, but there are others moving too, to put up shield laws to protect health care providers in their states when they get information about someone who is seeking reproductive care from an out of state, investigator not to comply with that if they think it is to do with abortion services. This is a really interesting area of the law. It's basically setting up a big fight between the states, but the notion behind this is to protect health care providers so that they know that they can treat people when they come into their facility without the risk of having out of state investigations take place. So that's a growing thing that we're watching as well.
Cazio? Well, I mean, it's and thank God you are. I think that, look, the challenge is, as you say, this is a whole new frontier. Right? And I think that some states, Texas, have a completely different point of view about, protecting people's rights and sort of the, certainly the danger of people who leave those protected states and come to a state like Texas. So I'm really glad that people are pushing the envelope, but we have to be fighting this back in all the states, including ones, where people are really have no way to know, and some of these laws are so ill defined, really no way to know what they would be prosecuted, cuted for, and what the dangers are of even of even showing up here. So it's it's really scary.
I wanna bring it back to where you started of just understanding what it's like on the ground. What is needed to help abortion seekers get the information that they need? Is is the problem misinformation and disinformation? Is it something else?
If you're trying to navigate this and you're a regular person, what do you do? Yeah. This is I I'm so glad you asked because this is something I am particularly interested in because there's been a lot of conversation and really good research done on, you know, sort of the disinformation, misinformation out there. And actually just, took part in a we did a big research project in January and looked at about 250,000, searches online because there has been this explosion of of searches related to abortion. And we really tried to isolate searches that were about finding an abortion, not just interested in the topic in general. And the interesting thing is there is disinformation and misinformation out there. It's not our biggest problem. In fact, I think, I mean, I had I had written down the numbers. I think that of the searches that happened, even the most, you know, aggressively sort of used disinfo site, I think, got 35,000 searches in a month. Whereas planned parented gets 20,000,000 searches in a month. And so in terms of an imbalance, it's pretty heavy. And in fact, we looked at people who did get to disinformation sites, what happened, and 90% of them, those searches balanced. They left immediately and kind of figured it out. I think the much bigger problem, and this is something that I think we all need to figure out, is the, sort of the chaos online. And so if you are an abortion seeker in the same research, piece we did, the top three things you want to know, the number one thing you want to know is, is it legal? And, of course, even the most well informed person, since this is a completely dynamic situation, and we could talk about the Miffy case that's pending in Amarillo, but it's very hard to know what's legal. The second question they wanna know is what can I get? How can I get an abortion? And the third is what does it cost? And depending on where you end up in that, in that search, you could get widely different information. And in fact, when we looked at, since the number one question is, is it legal? The top five places you end up if you're asking that question, number one is Wikipedia, number two is, the Center for Reproductive Rights, number three was the New York Times, number four was the Guttbacher Institute, and number five was Teen Vogue. Go Teen Vogue. I mean, I was just like, yay for you. Right? But, I mean, but the the obvious thing about all of those very good sources of information is none of those are abortion providers. And so I just think it is, while it is exciting that there's a lot of entrants in the field, I think for the abortion seeker, particularly who is really, afraid, and lives in a state where it's not legal, it's really hard to sort of navigate how to actually get the services and the care that you need. So I guess I would say on balance, we should be putting more thought into how to reduce sort of the friction and the chaos in the space. While I'm grateful that people are also addressing disinformation, we could do a better job ourselves of just making it clearer for folks.
I really love that point of underscoring that we need the accurate information to be able to be in the same arena as the mis- and disinformation, and that is complicated. That reminds me of something we were talking about backstage, Alex, that the state bills to ban websites that provide accurate information is terrifying to me as a First Amendment lawyer and a person who has a uterus and a citizen. Can you tell us a little bit about what those bans look like?
Yeah. So we've now seen this. The most recent one is a bill based here in Texas. Last fall, there was one in South Carolina, and we've seen model legislation being shopped around various states that quite literally tries to make it, illegal to host a website that provides information about access to abortion care. The one based here in Texas is trying to prohibit things at the Internet service provider level. So not just running the website yourself, but even giving access to a website at the ISP level if they're providing this type of information. And when you look at the the language surrounding the legislation, they're targeting not only abortion providers directly, also the advice websites that help guide you through, to access different resources and the abortion fund type websites as well. It raises very deep first amendment issues, right, in terms of access to information. It also raises really interesting questions under section two thirty for anyone who wants that type of tech conversation here at South by today of, you know, what it is to host information from third parties, on a site and whether or not that gives rise to liability. When we saw this legislation introduced in South Carolina last fall, it created a big outcry and they actually withdrew the bill. So the question is, you know, how much does this have momentum and do even lawmakers who worry about this, still have enough respect for the First Amendment that they don't wanna go down this path? But it's certainly a line that we're looking at. And all of it, to be honest, whether these laws pass or not, they all feed directly and contribute directly to the chilling effects that we're talking about here, where it is already people are scared to share information. They are scared about texting their friend to help them understand what their options might be to access abortion care. And this level of going after, you know, protected speech to get people understanding their health options, is just another arena where the fight is playing out.
Yeah. If I could just say something about the fear, because it's not really related to this specifically, but just to kind of illustrate, I I I just came in from California where I was yesterday, where, of course, people in Texas are now having to go to, to access legal abortion. And patients are showing up in California without having even had a pregnancy test and without having even called for an appointment because of the fear that someone would find out. And so I just it is a it is a public health crisis in this country. And I think that, we need more help with human centered design that focuses the abortion seeker in America and how they can actually get through all of this noise, to access the services that they deserve and need. So, it was just chilling to me to realize, that even someone who's made it that far had a lot of, a lot of anxiety even to get to California.
Yeah. Of course. I mean, let's let's talk about the resources that the Internet does provide. Right? So people today, unlike fifty years ago, have access to resources like telemedicine, online abortion funds. Those also face risks for all the reasons we've been talking about. But, Cecile, if you can talk to us about the landscape of aiding and abending litigations, the Miffy case that you, alluded to earlier. What's going on for the people who get past the information layer of the problem
and are ready to actually find a way to help themselves or their loved ones? What are the challenges they're facing? I mean, there's so many, but I so let's just take the Miffy case real quickly, which I'm sure many of you have read about, the case that's pending in Amarillo, where we have there is one federal judge who was appointed by Donald Trump, who was confirmed by, on a completely partisan vote, is a judge who has a whole history of anti women's rights, anti gay rights. It's it's no accident that this case ended up, in Amarillo, but it is essentially asking this judge to reverse, FDA approval of mifepristone, which is the most common form of the, medication that's used for abortion and it's most most common way that, abortions are take place in this country. So what is pending is what he you know, the question is what he will do. I some people even thought this ruling might come out today. It I think will come out any day now, but potentially this means no one in the country, would be able to access legally mifepristone. I don't care what state you live in. So we all know how miserable it is for people here in Texas, but this would take away access in every single state, even no matter how strong their own state constitution was and their own own state law. So I just can't even there is no way to overstate, how drastic this is. And just as we had never seen a constitutional right overthrown like we did in the Dobbs case, I don't believe, I could be wrong, but I have not been able to find any case in which a sitting federal judge single handedly takes away approval of what is a safe, medication that's been used by millions of people. So that's kind of that's, like, out there, and everyone should should be aware of that. I think that right now, the telemedicine is, of course, searched for online. There are some really great resources. Plan c pills does a very, very good job of actually providing I mean, they both test, pharmacies that provide, mifepristone. They make sure that they can, you know, give good information to people that are seeking this. They refer people to, Aid Access, which is, you know, housed outside of The United States Of America. And I believe they are the only provider that is shipping mifepristone into, into banned states. But again, this all could be turned on its head, if in fact mifepristone is, is no longer legally available in The US. I think the other thing to mention is, you know, we've talked about the fear. You know, if you are essentially forced to, get pills online, essentially, you know, self medicate, it can be really scary. And so I want him to describe, and we can all imagine the circumstances. And so there are other resources out there that I think are also important for people to know about. The M and A hotline is doing a tremendous job of being there actually staffed voluntarily by medical professionals so that any person who is facing questions or problems, and needs help can get it. Because as we know, it is very difficult in some states, including Texas, if you are miscarrying and go to a hospital. I've talked to people who have been turned away because they don't want to be responsible if, in fact, you try to self induce an abortion. So there are great resources out there, but I will say we are living in extremely scary dynamic moment, where the single most, importantly used source of, of abortion may become, unavailable, any day now. Sorry. That's the situation.
Well, it's no surprise that a number of the questions that are coming in are about what people can do to protect themselves. And so we'll start jumping into the questions. Please, I know you have many, get on your app and give us more. You know, there's a there's a couple of questions, themes of questions of how do we get companies who are this sort of intermediary layer, how do we get them to actually do something to protect us? We've identified the ways they can. Right? In collect less, have savvy retention schemes, encrypt your data, don't take what you don't need. But what levers do people have to sort of push the companies to do that? And, you know, I'm not sure if you're going to be able to sort of push the companies to do that? And, you know, Alex, I'd be curious to hear kind of what you are seeing on the just on the activism front, what advocates are saying, and how the privacy conversation is evolving in reaction to the very real stakes that we're seeing in this conversation.
Yeah. So I'll answer, and then I'd actually love your take too because I think you've been an ally in the privacy fights for a long time. And one of the things that is interesting to me is that this moment is putting a sharp focus on the need to better protect consumers' data, but we could equally be having this conversation about many other sensitive types of information and the need for companies to step up and protect their customers. And many of us have been having that conversation for a very long time. Right? The fight for federal privacy legislation is twenty five years old at this point, if not longer. And customers have been calling on businesses to improve their data practices for a number of years too. And And I think there's growing momentum around that as well. So one of the things when we're talking to companies is trying to say, you need to read the writing on the wall. Right? So whether it's the general data protection regulation out of Europe, whether it's the growing number of state privacy laws that we're seeing in California, in Colorado, in Virginia, in states across the country, whether it's the growing outcry in the amount of investigative reporting done by outlets like the Markup that every time prompt consumers to say, what? That's how you're using my data? I didn't realize, and to have a reaction, that this is a moment for companies to be more responsible and thoughtful. Again, we're not trying to devastate the online ecosystem. Right? I am a deep believer in the need and the love of of online services and the need for data to fuel that. But we could be a lot more responsible in how that is done, and that's why the data minimization story is real. Reducing how much you are collecting, really doing it for what's necessary for the business purpose that the user is expecting. So that's the advocacy pitch. You know, some days it feels like it's working, sometimes it doesn't. People are trying other strategies too. You're seeing an increasing number of shareholder resolutions trying to push companies to talk about not only what they're doing on data privacy in general, but this specific reputational risk that is created when you might be in the position as a company of handing over some of your customers' most private reproductive information for use in a prosecution against them. How How are companies addressing that threat and what are they gonna do? So you're seeing shareholders mobilize around that. You're seeing investors starting to ask that question in the startup scene in a way that I think is really valuable. And that's what we need really is all these different participants in the ecosystem and, of course, consumers themselves speaking up to say that this is what we want and this is the ecosystem we themselves speaking up to say that this is what we want, and this is the ecosystem we need going forward.
Yeah. I couldn't agree more. I think there's actually a lot of movement, and it's like many things. You don't see anything, you don't see anything, and then all of a sudden an issue bursts on the scene. And when it comes to privacy, I think, you know, it it's so interesting to me that a company with all of the marketing resources in the world like Apple decided to create a market position for itself saying we're the we protect your privacy. Right? That's saying something. That's responsive to something that people are recognizing the need and the urgency for having some control over the information that's being collected about you every time you go to school using, you know, an app, every time you do telemedicine, every time you just live your life. And I think, you know, the pandemic really accelerated a lot of that because technology became the mediating force for literally everything that we do. And so if you're a consumer and you have that vague sensibility, which I would say wasn't really there ten years ago. Right? Now it's it's it's worth it to think about what are the levers of power that you can pull. And we talk about a lot about that at the markup. If you're just a consumer, well, you know, vote with your feet. Buy the things that are privacy protective. You can use Google or you could choose to use something like DuckDuckGo. Right? You can choose to encourage those startups, those services, those offerings that are putting your privacy front and center. You can, of course, exercise your democratic rights to write to your legislative officials and put this on the agenda. And I think all of this is leading to this sort of moment of imagination that we have when we're seeing we're seeing the FTC go after companies like GoodRx for disclosing, you know, consumer data in a way that no one expected. We're seeing regulation from Europe. We're seeing things from California. So it does, you know, there's all this fear. And trust me, I'm terrified. But there's also momentum for sort of good outcomes. And I feel I feel pretty excited about that.
It's funny. I hadn't even thought about this until you started this this chain of sort of, the conversation. But there's a fascinating poll done by Peri Undum, just a couple of months ago about what people's greatest fear was post Dobbs, all the, you know, all the things that could happen, people going to jail, doctors losing their licenses. The number one fear was that prosecutors and law enforcement could get your personal search history and find out information online. And so I think this question of advocacy and people voting with their feet and voting with their pocketbook is not insignificant. And I'll just say, for whatever all the things that happened on this whole Walgreens story, you know, when their stock drops four points and people start saying I'm not going to shop there, it shows you, I think, the potency of this issue in general, and it is really important that people feel empowered to say this is not okay. I and whether it's choosing a different provider or saying to the companies they do that they do use, this is not this is not how we want to live. So it's it seems like there's an enormous grassroots potential right now, for this pushback.
Yeah. Absolutely. And I think there's also, conversations with companies thinking about this not only as a moral or ethical issue or a political issue, but thinking about it as a workforce issue. If you have employees who are in a state, like the state we're all sitting in, and they need to take time off to go receive care and travel out of state and they live in fear, that's a workforce development. That's a workforce health issue. Right? And framing it in that language too, you know, really pulling all the levers we can of how to have how to advocate for rights is really important. And I think we're seeing those conversations. Now oh, there are so many questions. This is very exciting. One question. Can you comment on how some of these same data privacy issues apply to trans and other vulnerable communities? Alex, I know you have a lot of thoughts on this. I do. Bless you for the question. So, yeah, we think about this as, very integrated. Right? So right now, we happen to be talking about,
reproductive data, access to reproductive care. That applies also to contraception, not just to abortion care. And then it also applies in the case of gender affirming care, which as we know is under attack in different states across the country. And the exact same set of issues applies here in terms of data access. So people are terrified about how their online search histories might be used, about their online browsing history. We have seen examples of prosecutors going after health care providers using data that they've inferred about their patients. And so all of the same protections that we're talking about here, putting pressure on commercial companies to not collect that information or to reduce how long they keep it for, to limit their sharing of that information with data brokers. All of that is deeply important. I'll share one anecdote. So one of the areas that we work in, is in student privacy. And there's a growing trend amongst schools to use tech based solutions as a children's safety measure. So for example, they call it student monitoring software. This is used to look at students' social media feeds. Or if you're on a school issued device, they will police the traffic that is going from that device. And this is all done in the name of student safety, basically. They're looking for people that might have mental health issues that might provide a threat of violence to the school. But what we found is that that technology is also outing gay students. It is creating a chilling effect for people that might be looking at their health options for gender affirming care. And so it just shows again kind of how many vectors technology can introduce for these types of prosecutions and how it can have an impact on, on different prosecutions and how it can have an impact on, on different vulnerable and targeted communities. So we really do need to think when we're talking about protecting people's information across the board in all of the different ways that this type of data can be weaponized.
So there's a question about how this situation that we're in is impacting the availability of data on reproductive health, including statistics on abortion rates from maternal mortality. And I I wonder if we're running into the sort of same impoverished data issues that you see around gun violence. Right? Right. And so cutting off access to some of the data really does impact the advocacy that's possible. Cecile, I would love your thoughts on this one. Well, I mean, it's such a good question. And I look,
I was actually, it reminded me of a conversation I had with a minister the other day in Dallas who said, you know, they used to actually help people, in the community get to New Mexico, because at that point that was, you know, the best option for a lot of folks. But then, of course, now that everything is criminalized in Texas, they can't do that anymore. And he said, you know, I know we hear the stories in, you know, sort of these, occasionally you'll see a big news piece about someone who said, what I worry about is the thousands of people we don't actually hear about anymore, which I think directly goes to this point. I want to flip it in one way since, actually, there was a great study by the Brookings Institute, that would that came out right before the Dobbs decision, which essentially tracked how after the Roe decision, maternal mortality, decreased, particularly for black women, that, women's health increased in so many different ways. There were like a number of healthcare statistics. And my worry is we're going to find out a lot of these things, but not until many, many folks have already been harmed. And, of course, there is no interest, in these states to monitor what's happening. And, in fact, even the denial that we're seeing in states where people are saying your own exceptions aren't working, women cannot access the care that they need even with, deeply, troubled pregnancies. Their the lack of willingness of anyone to acknowledge there were any problems with these laws is the same problem we're going to have here because they refuse to capture healthcare statistics that might underscore, the dramatic health effects that the overturn, overturning of Roe will have. Thank goodness there are really important academic institutions, including researchers here at the University of Texas, at UCSF, at Emory, who are actually, I think, doing a good job. But it's a huge, huge problem.
There's an interesting question about how all of this relates to nontraditional contraception like sterilization and tube tying. And I feel like anything that chills the relationship that you're having with your doctor
is a is a bad thing, but I know you have thoughts on this. Well, I just I mean, I I it's interesting that someone raised that. I and I don't again, for some of the same reasons that we're talking about, the the lack of of, the government having a focus on capturing these statistics, but when the abortion ban went in in place in Texas, I started talking to, doctors in El Paso because, they were really kind of the front lines for either for people that were coming across the border or people who were in El Paso trying to go across the border to Mexico. And one of the most horrifying things I heard was the number of women that were coming into them to be sterilized because they couldn't couldn't have another pregnancy right then. And I the thought that, sorry, I had really, anyway, the thought that anyone's would be making their decisions permanently about their future fertility and their future potential to have kids based on politics is is inhumane. And, so I'm I'm I'm glad someone asked that question.
We have a very south by question, which is, is there a technical solution to this question? Can crypto and blockchain secure both valuable data being collected? Godspeed, I want you to create, these solutions. I do wanna underscore the sort of human layer that we're talking about here is what it is like for human beings to navigate these systems. So if you can build a technical solution, you still have to think about the human layer of how do you get it into the hands of a person who, and you said this so poetically earlier, Alex, who's up on their phone at midnight when everyone in their house is asleep trying to figure out how they get care. But I'm curious if either of you are seeing technical solutions or other things that people are working on to try to be responsive to some of these issues.
So on the privacy front, we need stronger, more privacy preserving ways of being able to access information. Encryption is a big one. Right? For people's private communications with their family members and their friends and their doctor to actually be encrypted so that nobody has the record that law enforcement might then want to come after in the case of a prosecution. A lot of users think that is already the case, that when they are having a private conversation it's private and they are surprised when they realize it is not. And encryption is a really important technical tool to help achieve that. I think there is also more to be done in terms of access to information. And there, I mean, we we were talking about, you know, the law like the Texas, social media law were to go into effect and one couldn't actually access these types of websites from Texas. This actually puts in perspective the beautiful point that you just made. Right? The idea that somebody who is trying to access this information needs to know to download a VPN, to pretend that they're in a different state, to see if they can then access that information and then maybe able to act on it, but who would they text for advice? It's a nightmare, and I don't think there actually is a technical solution that helps with that even if the technology is there. So, yeah. We need strong privacy protection technology, but we also need to address the root cause, which are these deeply troubling laws in the first place.
There was a question up about what what are we seeing on the grassroots front for grappling with with issues around reproductive justice and privacy? And I know we've talked about the legislative layer. We've talked about some litigation. But what are we seeing from grassroots activists, Cecile?
I mean, I think that in an interesting way, because I know part of what we're going to try to talk about here is what makes us hopeful, because you just got to kind of think about those things too. I think on the one hand, there has been, an explosion post Dobbs of just local grassroots based efforts, whether they are kind of under the radar, whether they are self help organizations raising money to help people get out of state. But I think, and I, I, I know this is not a political conversation, but it's really hard to avoid the fact that all of these, all of the problems we're dealing with right now are politically motivated. They're not based on, health or well-being of people in this country. So I guess what I would say is where I see the grassroots action happening is people voting and people voting with their feet and people voting in November to defeat people who, oppose these. Right. I mean, it's I I could just I could say this not as a partisan matter, but just like as an observer of the world is that, you know, when you see candidates say that they really believe decisions about pregnancy should be made between a woman and her doctor and her local political elected officials, and then that person goes down to flaming defeat, I think it really just reflects, and we saw this in the election, that, people don't want that. That. And and I and I I guess I will also just give a shout out here to young people in this country. I personally I mean, this is this is probably my own little soapboxy kind of thing I have to say is that I feel like the most dramatic thing about the loss of reproductive, access is that it happened to millions of people who didn't even have a vote in this. Right? People whose futures were completely changed by this. And that's young Americans. And yet, this last November, they turned out in many states in record numbers. And, I just think it's so important that we, remember that for those of us who are past our childbearing years, that we cannot leave young people alone to fight this battle, and but we also have to support them and their creativity and their ingenuity and their, frankly, leadership, to restore the right of every person to make their own decisions about their bodies and their pregnancies.
Absolutely. So we before we get to our closing hopeful optimism question, I do actually have a hopeful question here about what can a start up do. Right? You're building something. You're in this room. You're going to other panels. You wanna avoid the pitfalls of ancillary data collection. How do you get started?
Yeah. So this is a question about data flows. Right? So having a really serious conversation within your teams, and it can be about the technical team, it's the product design teams that's, you know, thinking about what the monetization model is. But looking at what data are you collecting, why are you collecting it, how are you using it, and who are you sharing it with. And that actually can be harder than one sometimes thinks because, I mean, you were alluding to this before, the unexpected sharing that can sometimes come about. I mean, I do think actually this is where the markups reporting has been so helpful is just understanding that the pixels that can be placed on an intake form or, you know, on the on the welcome page for a website, that that in and of itself is a decision that you are going to be sharing information with large third parties without necessarily knowing where that data is going or what it's gonna be used for. And so there really is an important educating moment, about how you make those smart decisions. But I do think this is actually something that you can talk about because the markup has done this as a startup. Right? Not you don't just write about this, but you also try to live it through your business practices. So maybe you can add on this as well. Yeah. And I can tell you just how hard it was. So when we started, when we launched in 2020, we thought, you know, as a as a matter of sparking people's imagination,
what if we built a website that didn't have any tracking at all? Right? That we had newsletters that didn't have any and no way to detect whether you opened it or not because there's no pixel in it to tell us that. What would it look like to do it? And and not from a, like, a high horse perspective. Just like, can you do it? I gotta tell you, it was pretty hard. Right? We were like, should we use Mailchimp? Oh, wait. Can't use Mailchimp. Should we use this service? Oh, no. We can't. And then we would reach out to them and call them and try to engage with providers that you need when you're a startup. You're not building everything yourself. You're relying on a suite of other services you plug into. And, people thought that we were a little fringe and a little weird, but three years in. Right? Just three years. Right? We've only been operating for three years. We see more and more third party providers saying, oh, yeah. That's interesting. We could turn that off for you. Right? Like, let's let's talk about how to build this. The privacy consciousness is really blossoming, and I find that to be amazing. It does require elbow grease. Right? So as you said, Alex, figuring out what's the data that you're collecting, why are you keeping it, for how long, That kind of data mapping is really important. It's important to be compliant. It's also really annoying when you're, like, trying to get to your next funding round. You're trying to get something out the door. I think what's important about, this moment is that we're realizing what the stakes are to ignore it. Five years ago, if you're like, yeah, I'll get to data privacy later. It'll be fine. You probably were fine. Right? You probably were fine. You were certainly fine ten years ago. And with the advent of different data privacy regimes and and legislation that's coming from different corners, and the very human stakes of getting it wrong, I think it we're seeing people pause, stop, and say, this might be worth the elbow grease it requires. And, I think the most important thing is for companies to be in conversation with each other because it's lonely and it's hard to try to do things the ethical way, but it is in fact necessary.
The one educating moment that I would add in here is just how much information can be revealing of health information without actually being health information itself. So it doesn't just work to say, okay. Well, people aren't coming to me to get information about access to abortion, so I'm good to go. Right? Location data is probably one of the best examples of this. It's incredibly revealing, even if you were collecting it for, you know, very innocent purposes in the delivery of your services. So that's the other thing too, is thinking expansively about the risks. There are places to go, you know, model legislation, for example, that spells out what is sensitive information and helps explain why it's sensitive information. So thinking expansively there about what the vulnerabilities are and those areas where you really should have heightened responsibility and heightened cautions can be another good place to look. I just that thinking expansively
phrase is exactly right. I think traditionally there's been a very compliance oriented mindset here, which is, well, we don't have to do that because we're not healthcare providers, so we're not subject to HIPAA. Right? You have these sort of very narrow understandings of what you need to do to not get in trouble. And I think expanding that, you know, widening the aperture, looking at that and saying, what is it that we're gonna do so we're actually best in class, not just not getting in trouble, is an important way to sort of navigate this moment. Thinking expansively is exactly right. For a everyday person navigating these services, right, you're not the start up building it, you're not the company making it, you're just trying to navigate life. One thing I would also underscore is, and this is something the markup's written about too, you see sites that will say things like, this is HIPAA compliant. And they're not health care providers. They're not actually bound by HIPAA. They use that language to make you feel comfortable, and you feel just fine because it's just some supplements. Right? It's just some groceries. It's just something random. But, all of that still feeds into profiles that data brokers are making about you that have important health information, even if it's not you going to a doctor. So it's just important to be conscious of when you're navigating the Internet, what are the of crumbs of data and information about yourself that you're disclosing. And that that piece, unfortunately, is is on you. So we've just a few minutes left, and this is where I'm gonna try to bring it all the way full circle and say, this can be a really heavy and deep topic. But what makes you hopeful for the years to come and for the fight that we're having? What gives you hope in this moment?
So I'll do the tech piece for now, which is, a lot of us have been raising the alarm on data privacy for a very long time. I think this has been a distilling moment for many consumers, whether or not they themselves are trying to access reproductive care. The stories and the coverage and the examples of just how widespread this data ecosystem is has been illuminating. And so for me, that's important, right, that we're now having a reckoning. We're having these public conversations in a meaningful way. And that this is an area where people, including in the South by community, have agency. You are at companies that are participating in the data ecosystem. It might not be your day job, but you are in that ecosystem and you have access to people that can help improve the way we think about innovation in The United States today. And we can think about what responsible design practices and responsible data practices look like. And to me, that's incredibly energizing as an advocate, as somebody who cares a lot about making sure that the Internet ecosystem continues to flourish and thrive. The notion that we can do that grounded with respect for people's individual choices and their privacy and their individual freedoms is incredibly empowering. And so that's the to do that comes for me out of this and the moment of hope that I look for. Absolutely. Cecile?
Well, it's, even though we're talking about all the problems with the Internet, and privacy, I will say it's like we used to say at Planned Parenthood, even a right wing Congress can't un invent the Internet, and that was a good thing because, fifty years ago women were like looking on billboards and finding a phone number that they could call and then go to some, you know, and so I I actually think the power of information and the power of of linking people with services, is so so incredible. We have to do a better job. We have to anonymize all that and, I thank God you tech experts are figuring this out. I think the other thing that gives me hope, I guess, are just a couple of things that are not tech related, but, this is, to me, is interesting. Before Roe before the Roe decision, I don't even know what the numbers were, in the OB GYN community, but today 85% of OB GYNs are women. And a lot of them are mothers, and they are on the front lines of fighting for their patients. And so the courage that I am seeing of the medical community, to speak up and and speak out about not only their patients and the care that they provide and their right to privacy is incredibly, empowering. I'm also encouraged because I do believe there was a referendum on this issue. I mean, the broad issue of of abortion rights and access this past November. Some people didn't get the memo yet and didn't read it, but it was loud and it was clear and it was in Kansas and it was in Montana and it was in Kentucky and, a lot of states. And so I actually do believe that this country, we are going through a period that is going to be very harmful for a lot of people, but I do believe that the the folks in this country, are are really speaking up and speaking out. Unfortunately, I think it's gonna get worse before it gets better. This the decision to overturn Roe versus Wade is not going to age well. We are hearing more and more stories, and they're they're gonna continue to come out, but I guess that's what gives me hope. And then the last I already said, which is I just think young people, they are our greatest hope in this country on every issue, not just this issue. And so I guess my plea to everyone is and I there's a lot of young people in this room who's like, thank goodness you're doing what you're doing. We the rest of us need to be supporting you, encouraging you, getting out of your way, because it's your future that's at stake. So.
That we can fill a room at a tech conference at cough peak coffee time talking about data privacy gives me a lot of optimism as as did the amazing questions that we got about what people can do, how they can participate, and how they can improve things. So you all give me hope. Thank you very much for being here, and, enjoy South By. Thanks, everyone.
