March 06, 2023

Hirono Introduces Legislation to Expand Personal Health Data Privacy Protections

Following Supreme Court’s Dobbs decision, reports have shown companies are collecting and selling location data that could be used to identify individuals seeking reproductive health care services

WASHINGTON, D.C. U.S. Senator Mazie K. Hirono (D-HI) introduced legislation to expand protections for Americans’ personal health data privacy. The Upholding Protections for Health and Online Location Data (UPHOLD) Privacy Act would prevent companies from profiting off of personally identifiable health data for advertising purposes. It would also allow consumers greater access to and ownership over their personal health information, restrict companies’ ability to collect or use information about personal health without user consent, and ban data brokers from selling location data. In addition to Senator Hirono, the bill was also introduced by Senators Amy Klobuchar (D-MN) and Elizabeth Warren (D-MA).

“With Republicans working to ban and criminalize reproductive health care nationwide, it’s critical we safeguard the reproductive data privacy of everyone in our country,” said Senator Hirono. “Everyone should be able to trust that personal data about their bodies and their health care will be protected. By restricting the sale and use of personally-identifiable health data, this bill will give patients and providers the peace of mind that their private information is secure. I’ll continue working with Senators Klobuchar, Warren, and our colleagues to defend reproductive freedom and privacy for all.”

Recent reports have illustrated how social media companies are collecting and data brokers are selling location data that could be used to identify individuals seeking reproductive health care services, potentially exposing them to surveillance and prosecution in states where abortion has been restricted.

The UPHOLD Privacy Act would:

  1. Ban the use of personally identifiable health data collected from any source, including data from users, medical centers, wearable fitness trackers, and web browsing histories, for commercial advertising. The restrictions would not apply to public health campaigns (e.g., college students for vaccinations);
  2. Place additional data minimization and disclosure restrictions on companies’ use of personal health data without an individual user’s consent; and
  3. Prohibit  the sale of precise location data to and by data brokers.

A long-time champion for abortion access, Senator Hirono is committed to protecting the fundamental right to abortion care for all. Last month, she introduced the Secure Access for Essential Reproductive (SAFER) Health Act, legislation that would expand patient privacy protections by strengthening the Health Insurance Portability and Accountability Act (HIPAA) to prohibit medical providers from disclosing personal health information related to abortion or pregnancy loss without patient consent. Senator Hirono also urged the Biden administration to take new steps to protect reproductive freedom amidst divided control of Congress and increasing efforts to restrict access to abortion.

In August, she introduced the Let Doctors Provide Reproductive Health Care Act to protect doctors against Republicans’ non-stop attacks and ensure they can safely provide abortion care in states where it is still legal. She also led a letter to the Department of Health and Human Services urging them to make medication abortion more easily accessible. In July, Senator Hirono introduced the Freedom to Travel for Health Care Act of 2022, which clarifies that it is illegal for anti-choice states to limit travel for abortion services, and would empower impacted individuals to bring civil action against those who restrict an individual’s right to cross state lines to receive legal reproductive care.