TO: Interested Parties
FROM: Reproductive Health and Freedom Watch
DATE: June 27, 2024
RE: June 27 APRA Mark-Up Canceled Amid Pro-Life Opposition
At 10 am today, the House Energy and Commerce Committee had a scheduled mark-up of the American Privacy Rights Act (APRA). At 10:05 am, as privacy lawyers were tuned in, the markup was surprisingly “Canceled.”
Why?
Ahead of the scheduled (now canceled) June 27 markup of APRA by the House Energy and Commerce Committee, reports emerged that:
- “If pro-life groups come out forcefully against the bill, it will not be able to move forward”
- The House Freedom Caucus distributed a memo to lawmakers that outlines “threats to the unborn” in the bill, citing the threat the law would pose to pro-life organizations, including unregulated pregnancy clinics, in possession of client personal health information.
- Axios reported Catholic Vote, a multi-million dollar non-profit, sent a letter to members of Congress this week opposing APRA and asserting a broader extremist agenda that prioritizes penalizing women accessing abortion care and doctors providing it over protecting the safety and security of Americans’ private health information.
According to the House Freedom Caucus memo, if thousands of known, unregulated pregnancy clinics were legally compelled to comply with the data privacy standards they claim to follow voluntarily, they would be exposed to “service-ending legal fees.” The memo underscores the House Freedom Caucus’ concern that mandating compliance with data privacy standards could expose pro-life organizations operating unregulated pregnancy clinics to litigation that threatens to shut down their services which begs the question – what do House Freedom Caucus members know about the data management practices of unregulated pregnancy clinics that would cause such a concern?
Women deserve to know how the well-funded (est. $1.4B annually), pro-life organizations behind unregulated pregnancy clinics plan to use their sensitive health data, and all people deserve to have their health information protected. Efforts by members of the US Senate and multiple state Attorneys General to understand what pro-life organizations are doing with this data have been aggressively fought by pro-life legal organizations – do members of the House Freedom Caucus know why these organizations are so resistant to telling the American people why they are collecting personal health information, what they do with this data, and who they share it with?
Pro-life Organizations Operating Pregnancy Clinics Collect Personal Health Information and Are Not Covered Entities Protected by HIPAA
Unregulated pregnancy clinics, also known as crisis pregnancy centers or CPCs, are largely religiously motivated non-profit organizations that support regressive reproductive health policy (opposing abortion and birth control), and function as the mass, retail-facing backbone of the pro-life movement. These clinics promote services including medical care – such as pregnancy tests, ultrasounds, and reproductive health counseling – and are not regulated by state or federal health agencies. The unregulated pregnancy clinic industry is led by three organizations – Care Net, Heartbeat International, and the National Institute of Family and Life Advocates (NIFLA) – which have relationships with every part of the pro-life movement.
According to recent NBC News reporting, a spokesperson for the Department of Health and Human Services official told NBC News in an email: “Generally, a crisis pregnancy center that provides services for free and does not bill health insurance does not meet the definition of a covered entity under HIPAA and therefore the HIPAA Privacy, Security, and Breach Notification Rules (‘HIPAA Rules’) do not apply.”
And, according to Care Net, one of the largest unregulated pregnancy clinic networks in the country, “Most centers do not meet the legal definition of a covered entity under the HIPAA regulation because they do not furnish, bill, or are paid for health care in the normal course of business and do not transmit health information in electronic form in connection with a transaction for which a HIPAA standard has been adopted by HHS.”
Data Privacy Practices of Pro-life Organizations Operating Unregulated Pregnancy Clinics Are Under Scrutiny In Multiple States Amidst A Large Data Breach From Heartbeat International
Watchdog group Campaign for Accountability has asked attorneys general in five states to investigate the data practices of unlicensed pregnancy centers, and, recently, it was revealed that there was a large data breach at the country’s largest unlicensed pregnancy center network, where the sensitive personal and health information of a number of women was shown in a publicly visible video demonstration.
Opposition to Legally Enforceable Privacy Protections for Client Personal Health Information Undermines the Confidentiality Commitments Pro-life Organizations Make to Their Clients
Pro-life organizations operating unregulated pregnancy clinics typically1 promote their services as “confidential”; hundreds of these clinics promote voluntary compliance with HIPAA even though they are not covered entities protected by the privacy standards defined under HIPAA. Unregulated pregnancy clinics affiliated with national networks Care Net and Heartbeat International tout adherence to a “Commitment of Care and Competence” code that affiliates are encouraged to “download” and “hang up at your center” (emphasis added):
“Client information is held in strict and absolute confidence. Releases and permissions are obtained appropriately. Client information is only disclosed as required by law and when necessary to protect the client or others against imminent harm.” https://www.heartbeatinternational.org/about-us/commitment-of-care
Potentially millions of clients have provided these clinics with personal health information in the context of these commitments and thousands of unregulated pregnancy clinic staff and volunteers affirm these commitments as a condition of their work.
Public Rightfully Concerned About Unregulated Pregnancy Clinics’ Data Privacy Practices
According to 2024 polling by Global Strategy Group, 71% of voters support increased regulations for pregnancy clinics. This support never wanes, not even in the face of positive information about unlicensed pregnancy clinics.
The unlicensed pregnancy center industry and its allies want to have it both ways. They rake in billions, including taxpayer dollars, by presenting themselves as providers of critical “medical” services like pregnancy testing, ultrasounds, and mental health services for vulnerable women and girls. Yet, when it comes to regulation, they hide behind the label of non-medical or “limited medical services” organizations, insisting they shouldn’t be subject to regulated health and safety standards, and data privacy laws, or be accountable for the taxpayer funds they receive. This blatant hypocrisy undermines trust and public health and puts countless individuals at risk.
1 Contact RHFW for more information.