REPRODUCTIVE DATA PRIVACY
As part of EthicalTech@GW’s commitment to advancing privacy protections within widely deployed technologies, we established our Reproductive Data Privacy Initiative to address the ways in which individuals’ reproductive data privacy is at risk, to monitor content integrity in abortion-related online information, and to convene experts to develop solutions to protect reproductive data privacy and content integrity.
gENERAL iNFORMATION ABOUT THE iSSUE
- Abortion-Rights States Begin Shielding Digital Data Near Clinics (Bloomberg Law) — States including California, Washington, Connecticut, New York, Nevada, and Illinois have proposed and/or passed privacy safeguards for individuals seeking abortion including limits on geofencing near healthcare facilities, restrictions to in-state tech companies’ cooperation with out-of-state law enforcement, and protect the license plates of travelers to the state for reproductive care.
- A Year Since Dobbs, The Fight for Reproductive Privacy and Information Access Continues (Electronic Frontier Foundation) — EFF is advocating for further reproductive privacy including California’s A.B. 793 which would protect people seeking abortion and gender-affirming care from digital surveillance as well as the federal My Body, My Data Act.
- Does HIPAA Law Protect Information About Abortion? (Jezebel) — Advocates work to close the HIPAA privacy rule loophole which allows healthcare workers to share information with law enforcement when they believe a crime has been committed.
- Data privacy, abortion limits set to collide post-Roe (Roll Call) — In wake of the Dobbs decision, a patchwork of state laws on privacy and abortion create concern about the weaponization of health data collected online.
- Tech Companies Are Not Ready for a Post-Roe Era (Wired) — Silicon Valley companies have never had to seriously grapple with the criminalization of abortion access in the United States.
- Pregnancy Panopticon: Abortion Surveillance After Roe (Surveillance Technology Oversight Project) — There are still steps providers, lawmakers, and members of the public can take to protect pregnant people from a looming surveillance state, if only we act now.
A Student’s Guide to Reproductive Data Privacy
How can your reproductive data be used? Why should you protect your data? How can keep your data safe? We launched a guide to help educate students on how to protect their data and the importance of protecting reproductive data.
EVENTS
View our previous and upcoming events and recent event recaps here. You can also watch event recordings, including the most recent event that convened a remarkable group of experts on reproductive data privacy to discuss the most pressing issues facing us today.
rESOURCES
- Digital Defense Fund — tips to protect your reproductive data privacy – ENGLISH / SPANISH
- Electronic Frontier Foundation — tips for those involved in abortion access (written by Daly Barnett, May 4, 2022)
- Electronic Frontier Foundation — tips for those seeking an abortion (written by Daly Barnett, June 23, 2022)
- Asian Americans Advancing Justice — a guide to digital security for abortion/health care privacy (October 6, 2022)
- U.S. Department of Health and Human Services — information on your reproductive rights, including information on patient privacy
WATCH LIST
Below are areas we are focusing on that threaten reproductive data privacy:
- Sen. Wyden Exposes Data Brokers Selling Location Data to Anti-Abortion Groups That Target Abortion Seekers (EFF)
- Alabama IVF ruling: What does it mean for fertility patients? (BBC)
- Fertility app fined $200,000 for leaking customer’s health data (CNN)
- Indiana doctor sues AG to block him from obtaining patient abortion records (NPR)
- FTC Sues Kochava for Selling Data that Tracks People at Reproductive Health Clinics (FTC)
- Facebook turned over chat messages between mother and daughter, now charged over abortion (NBC News)
- Google Maps regularly misleads people searching for abortion clinics (Bloomberg)
- South Carolina bill outlaws websites that tell how to get an abortion (Washington Post)
LEGISLATION & REGULATION
List of passed legislation and regulation that supports reproductive data privacy:
Regulatory Action:
- HIPAA Privacy Rule and Disclosures of Information Relating to Reproductive Health Care (HHS Guidance)
- Protecting the Privacy and Security of Your Health Information When Using Your Personal Cell Phone or Tablet (HHS Guidance)
State Legislation:
- California —
- Washington —
- My Health, My Data Act (requiring consent or necessity-driven collection and processing of consumer health data)
Executive Action:
- Executive Order on Protecting Access to Reproductive Healthcare Services (July 8, 2022) — Data privacy guidance in Sec. 4 Protecting Privacy, Safety, and Security.
Resources on Pending Action:
- New York State Assembly is considering S00158, passed by the Senate, to protect health information, requiring communication to consumers regarding their health information as well as consent for its processing.
- Rep. Sara Jacobs Leads Reintroduction of My Body, My Data Act to Protect Reproductive and Sexual Health Data (2023)
- States are readying a flurry of privacy bills as Washington stalls (Washington Post) — written by Cristiano Lima, January 20, 2023
- Senators introduce Secure Access for Essential Reproductive (SAFER) Health Act (2023)— would strengthen HIPAA to protect patients seeking reproductive healthcare
- Congresswoman Sara Jacobs introduces My Body, My Data Act (2022) — would create new national standard to protect personal reproductive health data
*Updated 02/26/24.
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