Lobbying heats up to defend evidence in potential abortion cases

“The best time to take strong data protection measures would be the day Dobs leaked. The second best time is now,” said Matthew Cortland, senior fellow at Data For Progress, referring to the title of the Supreme Court decision last month that struck down the constitutional right to abortion. “This is an ongoing life and death emergency for millions of Americans. And frankly, the administration can’t wait any longer.”

The growing concern comes amid growing discontent from a number of important Democratic groups, including young voters, professional activists and many of the party’s legislators. They are dismayed by what they call the White House’s inadequate response to the court’s decision, both in tone and substance.

When it comes to data privacy, the focus is on HIPAA, the 1996 law governing the privacy of personal health information, and how the Biden administration can step up its regulatory efforts by using the FTC’s sweeping powers to crack down on firms’ “unfair and misleading practices.” involved in online data tracking.

With Congress deadlocked on privacy rights, “the Biden administration should do everything it can about health privacy right now, like enforcing HIPAA as much as possible and issuing stricter guidelines,” said Justin Sherman, senior fellow at Duke University. . Sanford School of Public Policy.

Instead of showing impotence — Becerra said last week that “there is no magic wand” to restore abortion rights — the Biden administration could have been more vocal about the importance of strong privacy laws, Sherman said.

Sherman is not alone. Activists and advocates for groups such as the Electronic Privacy Clearinghouse, the Surveillance Technology Oversight Project, and the American College of Obstetricians and Gynecologists are weighing in. Democrats in Congress have proposed legislation that, while facing significant barriers to passage, is increasing pressure on Biden.

Progressive Sens. Elizabeth Warren (D-Mass.), Bernie Sanders (I-W.) And Ron Wyden (D-ore.) Yes introduced Senate legislation prohibiting companies from selling health and location data. Rep. Sara Jacobs (California State) have an account at home this would limit the non-HIPAA health data that companies could collect and place new enforcement responsibilities on the FTC.

Wyden called the possibility of prosecutors gaining access to information about people’s abortions a “crisis of five alarms” and “surveillance of the uterus.”

HIPAA “wiggle room”

No state has yet passed a law threatening to criminalize people who have early abortions. But trigger laws in some states banning abortion are vague, and legal experts have said cases of POLITICO are possible. The laws that are now on the books really target abortion clinics.

The data that prosecutors can use falls into two categories: healthcare information covered by HIPAA and information collected by websites and apps.

The administration issued guidance last month covering protection for both sets of data. It states that data subject to HIPAA is protected from normal disclosure, but not necessarily from a court order.

Faced with such an order, the abortion clinic would be allowed, but not required, to disclose information. But the leadership did not give complete peace of mind to health workers or people who have abortions.

“He clearly clarified, explained and defined how the rules work. It’s not a perfect solution,” added Kirk Nara, a privacy lawyer at the law firm WilmerHale. “There is still room for maneuver in the rules.”

A section of the HIPAA rules allows providers to disclose protected health information without the consent of the individual if doing so would constitute a crime against the provider’s property. The provision is meant for situations where, for example, a patient attacks a nurse, Nara said, but could apply to abortions as well.

Changing this will require a lengthy rule-making process from the administration. On Friday, the White House said HHS would consider further action on HIPAA, but did not elaborate. Biden also said the Justice Department would hire lawyers to help patients and health care providers at no cost.

Privacy advocates are pushing for Biden to help keep patients and providers out of court. Eleni Manis, director of research for the Surveillance Technology Surveillance Project, said the administration should stop abortion providers from sharing medical information about their patients.

“Their proper role is to protect the integrity of the doctor-patient relationship, not as accusers,” Manis said.

In addition to passing legislation, Democrats in Congress directly lobby the administration. Sen. Michael Bennet Colorado and Nevada Katherine Cortes Masto wrote to Becerra last week urging him to update HIPAA rules so that clinics don’t share medical information with law enforcement investigating abortion cases.

The issue is as relevant as possible,” Masto said in a statement to POLITICO. “I am considering all options to better protect patient privacy.”

Online data exchange

Other data that may be relevant to prosecutions, such as Internet searches, location history and correspondence with abortion providers, is more vulnerable, HHS management admits. The administration has suggested that people who are considering an abortion turn off sharing information with websites and apps as a temporary solution.

“Ultimately, the best way to protect your health and personal information from being collected and shared by your personal mobile phone or tablet without your knowledge is to limit what personal information you send and store on or through the device,” the guide says.

Privacy advocates were unhappy, noting that this puts the responsibility on individuals rather than the inaction of tech companies and lawmakers.

While the administration urged Congress to take action, its message did not include a call for a data privacy law that could sway Democrats unwilling to pass a compromise bill.

“Comprehensive privacy legislation is good for a number of reasons, one of which is that it provides protection for people seeking reproductive health services,” said John Davisson, Senior Counsel for the Electronic Privacy Clearing House. “This should be part of the response to the privacy threats faced in the post-Caviar World. “

In particular, without support from Biden, Congress is unlikely to do anything in the near future. Subcommittee on Energy and Commerce at Home approved bipartisan legislation it will limit the data internet companies and data brokers can collect and store and require firms to get customer consent to share their health information last month, but the bill faces high hurdles because some Democrats say it doesn’t go in far enough.

The administration said Friday that Biden asked the Federal Trade Commission to take action to protect patient privacy. A person familiar with the White House plans, who was granted anonymity to expose their POLITICO, said Biden wants the agency to crack down on websites and apps that use “unscrupulous or misleading methods related to reporting, spying , exchanging or selling personal data.” information, including confidential health-related information.”

Becerra said the administration is considering options: “If we can do something, we will find it and do it.”

But the FTC has limited resources that could blunt its influence.

“Regulation is not only about having the law on the books, but also about having people who can enforce the law,” Sherman said. “In the case of the FTC, we need a lot more funding for the people working on privacy there.”

Whatever the regulatory and legislative hurdles, abortion rights advocates say they wish Biden would at least use his intimidating pulpit more forcefully to push those who own patient data to change their data collection practices.

Biden spoke about his concern that data brokers are selling information that could be used by law enforcement in Friday’s speech, but did not pursue tech companies or ask Congress to take action.

“The press gathered in front of me probably knows more about this than I do,” Biden said. “I’m not a techie. I’m studying. “

Others have more specific ideas. Writing for STAT First Opinion, Eric Peraxlis of the Duke Clinical Research Institute said hospitals should stop sharing data for commercial research purposes if it could allow prosecutors to get it.

And Google this month said it would remove location data from visits to abortion clinics, perhaps indicating that such a strategy could lead to voluntary changes in data collection practices.

“The only responsible step is to emphasize that the decision is not in the hands of pregnant women,” Manis said.