Healthcare technologies are rapidly evolving, producing new data types and innovative data uses. Data and technology can bring significant enhancements to the healthcare system, deepen patients’ and consumers’ engagement and understanding about their health, and be used as part of initiatives meant to improve health outcomes. It is critical to analyze how sensitive health and wellness data affect individual privacy and understand what it means for doctors, researchers, and companies to responsibly use such data. The FPF health team continues to build on its prior work on Consumer Wearables and Wellness Apps and Devices and Privacy Best Practices for Consumer Genetic Testing Services by exploring and addressing issues at the forefront and intersection of health, data, and privacy. Of main focus are the privacy challenges related to the collection, use, and sharing of both medical data and data that falls outside of the scope of HIPAA and FDA regulations. FPF brings together stakeholders to analyze how new technologies and data practices in the health ecosystem can impact individual privacy and promote the more effective and ethical use of data.
FPF Submits Comments with the National Telecommunications and Information Administration (NTIA) on Kids Online Health and Safety
On November 15, the Future of Privacy Forum filed comments with the National Telecommunications and Information Administration (NTIA) in response to their request for comment on Kids Online Health and Safety as part of the Biden-Harris Administration’s Interagency Task Force on Kids Online Health & Safety. Read the comments here. Young people increasingly engage with […]
FPF Files Comments for the FTC Health Breach Notification Rule Addressing Specific Definitions and Clarity of Scope
On August 8th, the Future of Privacy Forum (FPF) filed comments with the U.S. Federal Trade Commission (the Commission) regarding the Notice of Proposed Rulemaking (NPRM) to clarify the scope and application of the Health Breach Notification Rule (HBNR). The HBNR was promulgated in 2009 as part of the American Recovery and Reinvestment Act as […]
A New Domicile for Comprehensive Privacy in Delaware
On June 30, 2023, in the final hours of the Delaware legislative session, lawmakers in Dover passed House Bill 154, the Delaware Personal Data Privacy Act (“DPDPA”). If enacted by Governor Carey, the DPDPA will take effect on January 1, 2025 and follows the general model established by the Connecticut Data Privacy Act (CTDPA), with […]
FPF Files Comments with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights
On June 15, the Future of Privacy Forum (FPF) filed comments with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) regarding the Notice of Proposed Rulemaking (NPRM) on extending additional protections to reproductive health care data under the Health Insurance Portability and Accountability Act (HIPAA). One year ago last […]
(Health) Data is What (Health) Data Does in Nevada
Note: This title is inspired by Professor Daniel J. Solove’s recent essay, ‘Data Is What Data Does: Regulating Based on Harm and Risk Instead of Sensitive Data.’ On June 16, 2023, Nevada Senate Bill 370 (SB 370) was signed into law by Governor Lombardo, making Nevada the second state, after Washington, to pass broad-based consumer […]
Connecticut Shows You Can Have It All
On June 3rd, Connecticut Senate Bill 3 (SB 3), an “Act Concerning Online Privacy, Data and Safety Protections,” cleared the state legislature following unanimous votes in the House and Senate. If enacted by Governor Lamont, SB 3 will amend the Connecticut Data Privacy Act (CTDPA) to create new rights and protections for consumer health data […]
Optum & The Mayo Clinic Win the 2022 Award for Research Data Stewardship
Author: Randy Cantz, U.S. Policy Intern, Ethics and Data in Research and former Communications Intern at FPF On Wednesday, May 10, 2023, the Future of Privacy Forum (FPF) honored representatives from Optum and the Mayo Clinic for their outstanding corporate-academic research data-sharing partnership at the 3rd annual Awards for Research Data Stewardship. The awards honor […]
A New Paradigm for Consumer Health Data Privacy in Washington State
The Washington ‘My Health, My Data’ Act (MHMD or the Act) establishes a fundamentally new legal framework within U.S. law to regulate the collection, use, and transfer of consumer health data. Signed into law by Governor Inslee on April 27, MHMD was introduced by request of the Washington Attorney General in response to the Supreme […]
FPF Announces Recipients of the Third Annual Award for Research Data Stewardship
Today, the Future of Privacy Forum (FPF) — a global non-profit focused on data protection headquartered in Washington, D.C. — announced the winners of the third annual Award for Research Data Stewardship. FPF is a long-standing advocate for privacy-protective data sharing by industry to the research community to advance scientific insights and drive progress in […]
Race Equity, Surveillance in the Post-Roe Era, and Data Protection Frameworks in the Global South are Major Topics During This Year’s Privacy Papers for Policymakers Event
Author: Randy Cantz, U.S. Policy Intern, Ethics and Data in Research and former Communications Intern at FPF The Future of Privacy Forum (FPF) hosted a Capitol Hill event honoring 2022’s must-read privacy scholarship at the 13th annual Privacy Papers for Policymakers Awards ceremony. This year’s event featured an opening keynote by FTC Commissioner Alvaro Bedoya […]