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Sara Jacobs on why we need to protect reproductive health data

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Until last week, abortion was a constitutionally guaranteed right for as long as the internet has existed. Supreme Court decision on Friday to nullify Roe v. Wade will have some obvious ripple effects, most significantly the so-called trigger laws that 13 states have enacted to immediately ban the procedure. The decision also has huge implications for the information we access through our phones: personal reproductive data collected in apps and sold to brokers becomes much more dangerous, as they can be pooled or bought by the police or right-wing groups to, women considering an abortion.

Congresswoman Sara Jacobs, a California Democrat, believes that personal reproductive health data, such as that collected in time-tracking apps, should have special federal privacy protections. That’s the message behind her new account, the My body, my data lawwhich was introduced into the House on June 21. Democratic Senators Mazie Hirono of Hawaii and Ron Wyden of Oregon will propose a Senate version.

The bill, approved by groups like Planned Parenthood and the Electronic Frontier Foundation, would create a new standard through the Federal Trade Commission to protect reproductive health data.

We spoke to Jacobs about the bill and its political outlook on Friday, the day the Supreme Court made its controversial quash decision. roe† Her comments have been edited for length and clarity.

What requirements does your bill impose on technology companies?

It basically limits the data that can be collected, stored or used to what is strictly necessary to provide their product or service. So instead of just requiring what can be done with the data, we also write down how much of the data they are allowed to collect.

What would the protections do with regard to time-tracking apps?

I use a period tracking app every month. It predicts for me when I should get my period. For example, you might see that there’s currently no protection against, say, a right-wing group or non-profit group in Texas buying that data from these tech companies to create a way to check when women should get their periods, but its not (indicates a possible pregnancy).

What this bill would do is say that the app maker should only collect what is strictly necessary for what it needs to provide the service, and then not share or sell that data without my express consent.

Was the reason for writing this bill the leaked draft opinion in May which indicated that the Supreme Court was about to fall? Roe v. Wade

When the leaked design advice came out, I got text messages from friends and voters asking me what to do with these apps and all their other data. And I realized it shouldn’t be up to each individual person to figure this out.

Our job as a government is to protect, and especially for this: some of our most sensitive and personal data. It deserves the highest level of security and protection we can offer it, just like any other health data.

How can different groups use this data if it is unprotected?

Let’s talk about private non-profit groups first. We know that in Texas there is a premium law that is part of their anti-abortion laws; it encourages individual people to find out who is having an abortion so that they can report them. Right-wing groups are starting to collect and buy this data so they can see who should be pregnant.

We’ve already seen some of this data being used against humans. You could see in states where abortion is illegal, if you use this [app]it also has your location data, so even if you leave the state to try and have an abortion, this data could tell, and it can be used against you by law enforcement.

So one of these apps could read the smartphone’s GPS and match that data with the app data.

And this data is already on marketplace right now – I mean it’s very common for all kinds of apps and websites, not just reproductive. Their business model is basically to collect as much data as possible and then sell it for ad targeting purposes. That’s how they make their money when they offer this “free” service.

Do you think the police have their own kind of digital dragnet, which can be used to actively search for people who may be seeking abortions?

I’m not exactly sure what different local police forces use in terms of data surveillance. We know that many police forces use data surveillance as part of their job. But that’s why it’s so important that this is a data minimization approach, because it’s not just about what they have access to. It also limits what is even collected.

Aside from period tracking apps, there seem to be other ways a woman can accidentally reveal that she has missed her period. She might say it in a chat app or on social media. Does your bill cover those things too?

It covers apps, services, websites, searches, and it’s about reproductive or sexual health data.

So you don’t think we can trust companies like Apple to put proper restrictions on the app developers on data collection? Why do we need the federal government to get involved?

We cannot rely on the goodwill of individual companies. And this is a basic government service: protecting our most private and sensitive data. We are already doing it with HIPAA (Health Insurance Portability and Accountability Act of 1996) for other forms of health data. And this only ensures that our reproductive sexual health data has the highest level of protection.

For years, Congress hasn’t passed broad privacy legislation that applies to the tech industry. Where does your bill fit within this broader need for data privacy legislation? Is this something that can be swept into a bigger bill that includes more aspects of privacy?

As a millennial, I have lived most of my life online. I think it’s way too late for Congress to have a much bigger conversation about data privacy and protection. I also think there is an urgent need right now to protect this particular kind of data with specific kinds of protection needs.

For example, most of the data protection bills currently under discussion all have an exception (exemption) for small businesses and small non-profit organizations. But for this particular kind of data, you really wouldn’t want that to be cut out, because that’s actually one of the cases that we’re very concerned about, small right-wing nonprofit groups buying up this data. So this is a specific, urgent problem. It complements all other efforts.

Can you provide some insight into the politics surrounding this bill and how it is developing in Congress?

We have many co-sponsors from across the ideological spectrum. I was actually just talking about this with the lead today. I think everyone knows we need to act quickly to provide protection, given the Supreme Court decision. I think there is a good chance that there will be a vote.

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