The U.S. Supreme Court recently overturned landmark abortion rights case Roe v. Wade through a decision on Dobbs v. Jackson Women’s Health Organization. The world of health privacy is changing rapidly due to this decision. 

The implications of this decision goes beyond healthcare. The majority opinion stated that “there is no inherent right to privacy or personal autonomy in various provisions of the Constitution,” worrying privacy experts that warn that other privacy protections could be undermined in the near future.

Recently, several bills have been introduced to address privacy rights in the U.S. The American Data Privacy and Protection Act was unanimously voted in June 2022 to advance by the House Committee on Energy and Commerce subcommittee on Consumer Protection and Commerce towards a full committee markup. 

Other bills such as the Health and Location Data Protection Act and the My Body, My Data Act look to specifically target health data.

What is the Health and Location Data Protection Act?

On June 15, 2022, Senator Elizabeth Warren (MA) introduced the Health and Location Data Protection Act, a bill that would ban data brokers from selling health and location data of individuals. Its cosponsors are Sens. Ron Wyden (OR), Patty Murray (WA), Sheldon Whitehouse (RI); and Bernie Sanders (VT).

Let’s take a look at the provisions of the bill analyzed by Jeffrey D. Neuburger, a partner at Proskauer Rose LLP:

1. According to the bill, “data” is defined as “information that is linked, or reasonably linked to specific individuals, or specific groups of individuals who share the same place of residence or internet protocol address,” and “location data: entails “data capable of determining the past or present physical location of an individual or an individual’s device.”
2. The bill also defines what entity can be considered a data broker. A “data broker” is “a person that collects, buys, licenses, or infers data about individuals and then sells, licenses, or trades that data.” 
3. This bill would not allow aforementioned “data brokers” to “sell, resell, license, trade, transfer, share, or otherwise provide or make available.”
4. The Federal Trade Commission (FTC), state attorneys general, and affected individuals can sue to enforce this law. This bill includes a privacy right of action, where individuals can enforce their privacy rights and hold data brokers accountable through seeking “injunctive relief, deletion of data, monetary damages and attorney’s fees.”

What is the My Body, My Data Act?

On June 21, 2022, Sens. Ron Wyden (OR), a cosponsor of the Health and Location Data Protection Act), and Mazie Hirono (HI), along with Rep. Sara Jacobs (CA), introduced the My Body, My Data Act to protect personal reproductive health data. In a Senate press release, Wyden highlighted this bill was drafted in response to the leaked Supreme Court decision on Dobbs v. Jackson Women’s Health Organization. 

Companies would only be allowed to collect and store user data needed for their services, and individuals would have the rights to access or delete personal data. 

Jacobs highlighted the need to protect health privacy, especially in states like Texas and Oklahoma with “vigilante laws,” in which private citizens can sue those who violate the states’ abortion laws.

The bill has been endorsed by digital privacy nonprofit Electronic Frontier Foundation, and 56 members of Congress have cosponsored the bill. 

What Will Happen to Health Privacy Now?

Going forward, data will play a larger role in national politics and in discussions surrounding technological innovation. When Roe. v Wade was decided in 1973, the digital age had just begun, and now in the 21st century, our entire lives can be traced through digital trails. 

The Supreme Court decision has definitely put America in limbo, making it unclear how much data individuals produce, who can use it, and its role in law.

ABOUT THE WRITER

Katherine Zhang is a contributor to Identity Review from the University of California, Berkeley.

Do you have information to share with Identity Review? Email us at press@identityreview.com. Find us on Twitter.

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