US anti-abortion group’s data trove represents ‘serious concern’ post Roe

Abortion-rights supporters chant their objections at the Kentucky Capitol on April 13, 2022. In the aftermath of the Supreme Court’s decision to overturn Roe v. Wade, data about women seeking abortions – and health-care professionals and others who assist them – has become an explosive issue. — AP

Heartbeat International, an Ohio-based nonprofit, has spent years collecting data on pregnant women to develop better ways to make sure women carry pregnancies to term and to persuade them from getting an abortion.

Based in Columbus, it says that it provides support services to the world’s largest network of “pro-life pregnancy resource centres”, which are also known as crisis pregnancy centres. Such facilities often misrepresent that they provide options for reproductive health services and instead are focused on preventing abortions.

Heartbeat also offers a hotline and website for “abortion pill reversal”, a procedure that medical authorities say is unproven and potentially dangerous. Medication abortion is a two-pill course, and Heartbeat seeks to persuade women who contact them from taking the second pill.

“For instance, we know that 75% of the people that reach out to us for abortion pill reversal do so within the first 24 hours of taking that first pill,” said Jor-El Godsey, the organisation’s president. “That’s very important for us, to adjust our services to those who are calling in the future.”

In the aftermath of the Supreme Court’s decision to overturn Roe v. Wade, data about women seeking abortions – and health-care professionals and others who assist them – has become an explosive issue. Abortion is now banned in ten states, casting a spotlight on companies and organisations that store information about women inquiring about the procedure.

While Heartbeat's policies on data collection have been in place for years, privacy and reproductive rights advocates are paying heightened attention to them now that Roe v. Wade was reversed. Heartbeat’s information – among the largest repositories of data on women who visit crisis pregnancy centers and attempt abortion reversal – could be used to build a case against these clients and their doctors, these advocates warn.

Heartbeat’s information represents a “data honey pot”, said Johnny Lin, chief technology officer at Lockdown Privacy, a company that offers to block apps from tracking users. He worries that information about women who inquire about reversing an abortion pill would be valuable for prosecutors in states where the procedure is illegal.

For instance, Heartbeat’s abortion pill reversal website includes a chatbot that encourages visitors to the website to share their name, whether they have had an abortion and when, and their location in order to direct them to someone in its network who can help with the reversal procedure.

“It’s a more direct route to information on women who have begun an abortion,” Lin said.

But Heartbeat isn’t eager to hand over its files, Godsey said, adding that maintaining the confidentiality of women who contact Heartbeat and its affiliates is paramount. The organization would “work to protect her confidentiality to the best of our ability”, he said.

Godsey also defended his organisation’s collection and use of data on pregnant women, saying it was “just like the information being compiled by Planned Parenthood”.

Melissa Nystrom, a spokesperson for Heartbeat, added that it was “well-known that anonymised data is routinely studied by businesses so that they can better serve their customers. Organizations on both sides of the debate do just that. It is perfectly legal and considered ethical." A spokesperson for Planned Parenthood didn’t return messages seeking comment.

The privacy policy for two of Heartbeat’s websites – one that refers women to crisis pregnancy centers and the other for abortion “reversals” – say the organisation may turn over a person’s information in situations involving “illegal activities”. The information Heartbeat collects – from its abortion pill reversal site, its hotlines and some of the data from software used by crisis pregnancy centers – isn’t covered by HIPAA, the US law that seeks to protect patient data, as it is not collected during insurance transactions by covered medical providers, Godsey said.

Bloomberg found no indication that Heartbeat has turned over data to authorities since Roe was overturned.

In 1971, Dr. John Hillabrand, a Toledo, Ohio obstetrician, and Lore Maier, a refugee from Nazi Germany, founded Alternatives to Abortion as a clearinghouse to track and share contact information among pregnancy help centers, maternity homes and adoption services. Its name was later changed to Heartbeat International. Its website describes it as a Christian organisation whose policies and materials are “consistent with Biblical principles,” and it states that the group objects to birth control, same-sex marriage and sex before marriage.

Godsey said he got involved in the anti-abortion movement in the 1980s following a religious conversion and a girlfriend’s abortion. As Heartbeat’s president, he became aware of how data could be used to assist in the nonprofit’s mission in the 2000s, by tailoring pregnancy services so that affiliates could more effectively convince women to not get abortions. Many crisis pregnancy centers were using different client management software to organize appointments. The centers also stored information shared by clients, tracked donations and remained in contact with pregnant women, according to Godsey.

Heartbeat decided to offer its own software, called Next Level client management services, to crisis pregnancy centers for up to US$100 (RM445) a month. The software collects includes names, addresses, email addresses, marital status, living arrangements, alcohol and drug use, medical history, pregnancy history and ultrasound photos, according to its website. The software also has a “client risk tracker” feature which keeps “staff up to speed on each individual woman’s anticipated risk level built into Next Level’s framework,” because “every client comes with a target on her back from the abortion industry.”

“We saw the need to basically get into that environment so that we could have clarity on what is happening in the movement,” Godsey said. “We wanted to combine the information so that we could more easily pursue some of the demographic research on clients and how centers were serving them and how we can improve.”

Godsey declined to say how many customers used the software.

In addition, Heartbeat says it has more than 1,000 healthcare professionals in its “abortion pill reversal” network that is accessible by phone, live chat, email and text. The reversal involves convincing a woman to not take the second abortion pill, in addition to being administered the hormone progesterone to try to offset the effects of the first pill. The American College of Obstetricians and Gynecologists has warned that “medication abortion ‘reversal’ is not supported by science.” Godsey said he stands behind the safety of the treatment.

The website and hotline is widely advertised on social media platforms such as TikTok and in crisis pregnancy centers. The term ‘abortion reversal’ was coined by San Diego doctor George Delgado who authored two studies claiming that hundreds of patients who were given Progesterone after taking mifepristone, the first of two pills taken during a medical abortion, carried pregnancies to term. Delgado ran his own website and hotline to offer progesterone, staffed with a handful of volunteers. In 2018, Heartbeat took over Delgado’s network for US$1, Godsey said, with the goal of scaling it to an international effort. Delgado didn’t return several messages seeking comment.

A 2021 study published by The Alliance: State Advocates for Women's Rights and Gender Equality, called “Designed to Deceive”, found that 35% of crisis pregnancy centers promoted abortion “reversals”. The centers have been criticised by academics, government officials and politicians for masquerading as medical centers for pregnant women when their goal is to convince women not to get abortions. California's Department of Justice has described them as “organizations that seek to discourage people facing unintended pregnancies from accessing abortion care” and warned that centers “staffed by non-medical personnel are not required to keep your medical records private” in a bulletin published in June.

Privacy experts have raised concerns about Heartbeat’s extensive data collection before. In 2019, UK-based Privacy International warned that Heartbeat International and affiliated organizations were using misleading claims to attract “abortion-minded” people and that it wasn’t clear how the data it was collecting is analyzed or shared. A representative for Privacy International didn’t respond to messages seeking contact.

Jenifer McKenna, the co-author of “Designed to Deceive” and program director at women’s rights group The Alliance, said “in short, Heartbeat’s websites and privacy policies both the Option Line and Abortion Pill Reversal websites, and the chat bot and privacy policy page they share, seem designed to obscure that Heartbeat International is even involved in those sites, let alone the organization collecting users' personal data.” McKenna called Heartbeat’s data trove a “serious concern” in the wake of the Roe reversal, and more generally, the potential for weaponizing digital data against pregnant people a “profound threat”.

Next Level software’s client tracker “seems designed to invade the digital privacy of pregnant people,” said Kimberly Kelly, associate professor of sociology at Mississippi State University.

“They’re tracking people to see how long they are in their pregnancies and contact them until they have convinced them not to have an abortion,” she said.

Several states have adopted “personhood” laws in which doctors or people who assist with an abortion may face prison time and fines. Not all have explicitly pardoned people seeking an abortion, which has raised concerns among legal experts who fear they could also be charged with a felony.

With abortion now outlawed in some states, Godsey said he believes Heartbeat International and its affiliates are more needed than ever. And while Heartbeat seeks to make abortion unnecessary and unthinkable, whether it is illegal – which may cause prosecutors to compel Heartbeat to turn over its records – is “another question”, he said.

“We are always mindful of what the law requires,” he said, but insisted, “We’re going to protect her confidentiality to the best of our ability.” – Bloomberg

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