Abortion researchers’ security problem

The ideas and innovators shaping health care

Oct 01, 2024 View in browser   By Ruth Reader, Erin Schumaker and Daniel Payne TECH MAZE Abortion researchers worry law enforcement could gain access to information about their video calls. | AP Photo Data privacy fears are hampering research on abortion, threatening to leave doctors and scientists in the dark about the health impacts of bans affecting a third of the country, according to people who study the procedure. It’s yet another ripple effect of the Supreme Court’s 2022 Dobbs decision that removed federal protections for abortion, allowing more than a dozen states to impose near-total bans on the procedure. Though no researcher or research subject has faced charges since the fall of Roe, the chilling effect impacts studies on abortion, contraception, fertility and maternal mortality. This has raised experts’ fears that less and lower-quality data will negatively shape how doctors provide clinical care and government policymaking at the state and federal levels. How so? Studies examining who travels out of state for abortions, who orders abortion pills online and the factors leading to unwanted pregnancies are in jeopardy because the popular tech platforms that researchers rely on won’t say how they’d respond to a state government or law-enforcement subpoena for such data. Because the tech platforms won’t say, the National Institutes of Health isn’t giving researchers the legal protections they say they need, Ruth reports with POLITICO’s Alice Miranda Ollstein. “Some of the work we do would be impossible without using online data-collection platforms,” said Heather Gould, the project research director for reproductive sciences at the University of California, San Francisco. “This will have a direct bearing on the quality of our data and the usefulness of our findings.” What’s next? Researchers have asked the NIH for guidance on which software it considers secure enough for sensitive research but haven’t received an answer, leaving many unsure how to proceed. The NIH’s blessing is crucial because many universities won’t sign off on abortion studies without the federal agency’s “Certificate of Confidentiality” to guarantee the data can’t be seized and used in prosecutions. Some academics are switching to foreign platforms that are more secure but less user-friendly. Others are foregoing NIH protections for their data to keep using the tech tools supported by their universities, leaving their work potentially vulnerable to a subpoena. Some researchers have turned to consulting with groups like the Digital Defense Fund, an abortion rights group, to help them find the most secure encryption programs. And still others are dropping some forms of high-tech research altogether out of fear their data could be used to identify people terminating pregnancies. WELCOME TO FUTURE PULSE Nashville, Tenn. | Shawn Zeller/POLITICO This is where we explore the ideas and innovators shaping health care. There's a new toolkit online for agencies looking to pursue "food as medicine" programs. The website from HHS' Office of Disease Prevention and Health Promotion describes pilots at the Indian Health Service and in North Carolina to provide healthy food to people who need it. Share any thoughts, news, tips and feedback with Carmen Paun at cpaun@politico.com, Daniel Payne at dpayne@politico.com, Ruth Reader at rreader@politico.com, or Erin Schumaker at eschumaker@politico.com. Send tips securely through SecureDrop, Signal, Telegram or WhatsApp. WASHINGTON WATCH The NIH has a plan to protect its scientists. | Francis Chung/POLITICO The agency responsible for spending nearly $50 billion annually in medical research funding, the National Institutes of Health, has finalized a plan to protect the work of its scientists from political interference, the White House Office of Science and Technology Policy said Monday. How so? The NIH policy, set to take effect on Dec. 30, tasks the agency's associate director of science policy — Lyric Jorgenson — with overseeing cases of alleged political interference and running them up the chain to the NIH’s chief scientist. Jorgenson will lead the NIH’s first Scientific Integrity Council, formed to review those cases, and participate on another Scientific Integrity Council at the Department of Health and Human Services, NIH’s parent agency. Besides safeguarding against political interference, the NIH’s integrity plans aim to ensure research is rigorous, bias-free, transparent and reliable; deter and punish research misconduct; and ensure whistleblowers are heard and protected. The backstory: President Joe Biden called on agencies to write such plans in the first days of his administration following incidents during the Covid-19 pandemic in which his predecessor, Donald Trump, pressured government scientists. The NIH is one of 19 federal agencies that have updated or strengthened their scientific integrity plans, according to the White House. Even so: The new integrity plans are agency policy that future administrations could change or scrap. What’s next? Working with HHS, the NIH plans to develop an evaluation plan using metrics to determine whether the policy works. That will involve producing an annual report that details the number of scientific integrity investigations the NIH has launched and their outcomes. THE REGULATORS Fluoride may be good for your teeth, but it can be bad for your kid's brain, a federal judge has found. | AP A federal district court judge has ordered the Environmental Protection Agency to regulate fluoride, a chemical added to many U.S. drinking-water systems to fight cavities, after finding that it poses an unreasonable neurotoxic risk to human health. The ruling last week from Judge Edward M. Chen in San Francisco comes after a seven-year legal battle between the EPA and anti-fluoride activists, our Alex Guillén reports. The backstory: Food & Water Watch, the Fluoride Action Network and other environmental groups petitioned the EPA to ban water fluoridation, arguing that when ingested, fluoride lowers IQ and poses other neurotoxic risks. The EPA denied the petition in 2017 after concluding it failed to provide a “scientifically defensible basis” for the claims, prompting the groups to sue. The ruling: Chen agreed with the activists, concluding that a “preponderance of the evidence” suggests that fluoridation at 0.7 milligrams per liter, the level considered optimal in the U.S., poses an unreasonable risk of reducing children’s IQs. What’s next? Chen’s finding compels the EPA to regulate fluoride in some manner — but the details will be up to the agency for now. “This order does not dictate precisely what that response must be,” Chen wrote. “One thing the EPA cannot do, however, in the face of this Court’s finding, is to ignore that risk.” The law gives the EPA wide leeway to determine the appropriate regulation of fluoride in drinking water, ranging from a simple warning label to a complete ban, Chen noted. The EPA said it’s reviewing the decision.   Follow us on Twitter Carmen Paun @carmenpaun Daniel Payne @_daniel_payne Ruth Reader @RuthReader Erin Schumaker @erinlschumaker   Follow us

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