A proposed bill looks to protect reproductive health data privacy

This story was originally published by Michigan Advance.

A hearing was held last week by the Michigan Senate’s Committee on Housing and Human Services on legislation that would require informed consent of an individual before their reproductive health data could be collected.

Senate Bill 1082 was introduced by state Sen. Mallory McMorrow (D-Royal Oak) on Nov. 7, two days after the election which will return President-elect Donald Trump to the White House in January. It also spelled the end of Democrats’ two year control of state government as Republicans regained control of the Michigan House. The Legislature is only in for a few more weeks before a new session begins in January.

Democratic Gov. Gretchen Whitmer told the Michigan Advance in October that the legislation was a priority for her.

“I think there is a wide world of data that is being collected on us that the average person doesn’t know,” McMorrow told reporters after the hearing. “I think this is, at least in my mind, how we can start digging into how we protect Michiganders’ data in an issue area that is, No. 1, highly sensitive, highly personal, and highly charged right now. Given the political environment, a new administration coming into the White House, we’re not sure what’s going to happen there, [and] we can start to hopefully, if this goes well, become a model for how we protect consumers’ data as it relates to everything else.”

The bill seeks to enact the “Reproductive Health Data Privacy Act,” which would, among other things, prohibit the collecting or processing of an individual’s reproductive health data without obtaining their informed consent, which would include providing them with privacy information and the specified purposes the data would be used for.

Testifying to the committee about her bill, McMorrow said the prevalence of digital devices and the personal information we surrender to them, usually unwittingly, was something that was of great concern.

“How many of us have a smartwatch or a fitness tracker? I have one myself,” she said, holding up her wrist. “While it’s primarily a running watch, this little thing does a lot more,” said McMorrow, noting that it can track her stress levels and water intake, as well as provide the option to track menstrual cycles. 

“Period tracker apps have become wildly popular over the past few years as women seek more avenues to take control of their own reproductive health,” she said. “I used one myself when my husband and I decided we wanted to start trying to have a kid, and I found it very useful in terms of making that plan in the global pandemic.”

However, McMorrow said as the public enters more of their health and personal data into their phones, watches, and digital services, they may be trading away their personal privacy as the data in question is not necessarily secured behind federal patient privacy protections and can be sold or distributed without consumers’ permission.

McMorrow pointed to a study earlier this year by the King’s College of London which found that 20 of the most popular female health apps put women at risk by coercing them into disclosing highly sensitive data with very few safeguards, including the lack of a delete function about menstrual cycles and miscarriages, leaving users vulnerable to possible action by law enforcement in areas where abortion is illegal.

That is of key concern for many women since the U.S. Supreme Court overturned Roe v. Wade in 2022, which had provided a federal right to an abortion for 50 years. However, after Roe fell, it became clear that digital data could potentially be used by states like Texas to prosecute residents seeking abortions outside the state. 

Whitmer has spoken out about the need for regulation of reproductive health data since Roe was overturned, and told the Advance last month that she was eager to sign such a bill into law.

“We know that there are all sorts of ways that our data is being misused or weaponized and used against people,” Whitmer told the Advance. “I think it’s a very real concern that Michigan women and people that use data apps, like for period tracking, etc., have privacy protections.”

In her testimony, McMorrow pointed to the 2015 conviction of an Indiana woman who was sentenced to 30 years in prison for feticide after prosecutors used her text messages and Google search history to convict her for using abortion medication and subsequently delivered a stillborn fetus. The conviction was later overturned by that state’s appeals court which ruled Indiana’s feticide law was not meant to prosecute women for their own abortions.

“This legislation is crucial to protecting Michigan’s reproductive health data, setting clear regulations for the collection of such data, and ensuring that the data cannot be sold or shared without users’ expressed permission and prohibiting companies from targeting them with ads, messages, or collecting information when they are near doctors’ offices or women’s health clinics,” said McMorrow.

Cody Venzke, the senior policy counsel for the ACLU National Political Advocacy Division, also testified in favor of the measure. Venzke said the bill’s main protection was through its requirement of data minimization.

“Data minimization means limiting the collection and use of our data to what is needed to provide the services we request. If you permit a mapping application access to your geolocation to provide directions, under data minimization, [entities] will be prohibited from using that data to secretly identify what health clinics you have visited,” he said. “Similarly, if we provide bodily statistics to a fitness tracker, it will not sell those through a data broker. Under this bill, Michiganders can be confident that the data they provide for support services is used only for those services.”

One of the key elements discussed at the hearing was the use of geofencing, a process in which an individual’s cellular data is tracked within specific geographical boundaries and then used to target ads to their digital devices.

“How often have you seen ads on your phone, maybe in an article that you were reading, that seems uniquely tailored to you based on where you were?,” McMorrow asked the committee. “Women have already been targeted with specific ads and messages only when they are in or near women’s health clinics.”

That prompted concerns from state Sen. John Damoose (R-Harbor Springs) about potentially infringing free speech rights.

“Are we not proposing to this bill that if you’re a woman who happens to be driving within a mile of an abortion clinic, I’m no longer allowed to advertise to you?” he said. “I mean, could a church be caught up in that as well, a church running an ad because it may be a pro-life church or something like that, which I think falls right into a First Amendment consideration.”

McMorrow said the bill’s language is restricted to 1,850 feet from the perimeter of the physical location in question and is specifically tailored toward organizations who collect and use data related to reproductive health to target an individual who is seeking reproductive health care. 

“So in your example, if you’re a church within that boundary and you’re just advertising a church, that would not fall under those guidelines and would be exempt,” she said. 

Elisabeth Smith, the director of state policy and advocacy with the Center for Reproductive Rights, also testified in favor of the legislation.

“Organizations that are collecting this information to provide services would be the ones prohibited in only a small perimeter from providing targeted ads in three specific circumstances; if they are identifying and tracking people, if they are collecting data from these individuals, and if they are then sending notifications, messages, or advertisements,” she said.

“So, I would still be allowed to run my pro-life ad in an area surrounding an abortion clinic as long as I haven’t collected data on a specific person related to that?” said Damoose.

“If you don’t fit the definition for the bill, then nothing in your behavior would be regulated by the bill,” said Smith.

McMorrow’s legislation would also prohibit the disclosure of an individual’s reproductive health data to a government agency or official unless the entity were presented with a legal warrant.

“This is critical language because what we’ve seen in research is that prosecutions for pregnancy outcome, in almost half of the circumstances, come from information being provided to law enforcement when there is not a warrant, when there has not been a specific process, but the information is just provided,” said Smith.

The committee did not take a vote on the bill at the conclusion of testimony, with McMorrow indicating that there would likely be some changes based on what they heard Tuesday. 

“I just introduced this legislation last week. We had a lot of interest and a lot of questions, so working with the chair and my team, we want to make sure we have a thorough sub that takes people’s feedback into consideration, but it’s been overwhelmingly positive. We’ve had no opposition from any group, just a lot of questions and we want to make sure we get it right,” said McMorrow, who also noted that time was not necessarily on their side.

“Given this is lame duck, and we have a few weeks left, we’re trying to run what we can run and get it done,” she said.

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