There was some hope 2022 would be the year Congress would vote on the American Data Privacy and Protection Act (ADPPA) – ambitious legislation that would limit companies to only collect, use, retain and transfer personal information that is “reasonably necessary” for the original purpose it was collected for. The bill did not make it to the floor of the Senate or the House, but it still has broad support and there are new efforts to push it forward.
In the meantime, several federal agencies are considering rules that would provide some level of data protection. The Department of Health and Human Services is looking at updating the Health Insurance Portability and Accountability Act (Hipaa) to introduce more privacy protections for information related to reproductive care. The update would prohibit the disclosure of personal health information in response to any investigation into any person seeking, obtaining, providing or facilitating “lawful” reproductive health care. Privacy organizations, including Epic and the Center for Democracy and Technology (CDT), have commended the proposed changes, though they have argued the rules could be stronger. The rules as proposed will only prohibit the disclosure of health information in relation to abortions that are considered legal or “lawful” which Epic says is unnecessarily limiting and creates potentially harmful ambiguity. CDT has also argued the rules should require law enforcement to get a court-ordered warrant to retrieve any personal health information.
The Federal Trade Commission (FTC) is also considering rules that could curb law enforcement access to health data and has started accepting comments on whether and how the agency should issue rules that would limit commercial surveillance. “The growing digitization of our economy – coupled with business models that can incentivize endless hoovering up of sensitive user data and a vast expansion of how this data is used – means that potentially unlawful practices may be prevalent,” the chair of the FTC, Lina Khan, said in 2022.