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 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 […]
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 […]
Five Big Questions (and Zero Predictions) for the U.S. State Privacy Landscape in 2023
Entering 2023, the United States remains one of the only global economic powers that lacks a comprehensive, national framework governing the collection and use of consumer data throughout the economy. Congress made unprecedented progress toward enacting baseline privacy legislation in 2022. However, the apparent impasse in the efforts to move H.R. 8152, the American Data […]
ITPI: New OECD-Israel Workshop January 2021 Report
The Israel Tech Policy Institute (ITPI) is excited to share a new report on key issues emerging from the OECD Workshop: ‘Supporting Health Innovation with Fair Information Practice Principles‘. The OECD Workshop was held virtually from 19 – 20 January 2021, in collaboration with the Israeli Ministry of Health and the Israel Tech Policy Institute. The report was drafted by Limor Shmerling […]
The Significance of Inclusion in Clinical Trials and Medical Research Databases
Our colleagues at the Israel Tech Policy Institute (ITPI) published a thoughtful blog on the significance of diversity and inclusion in clinical trials and health and medical research databases. They discuss the imperative of being represented in data, for one’s existence to be recognized and considered. When such data is the building block for a […]
BCIs & Data Protection in Healthcare: Data Flows, Risks, and Regulations
This post is the second in a four-part series on Brain-Computer Interfaces (BCIs), providing an overview of the technology, use cases, privacy risks, and proposed recommendations for promoting privacy and mitigating risks associated with BCIs. Click here for FPF and IBM’s full report: Privacy and the Connected Mind. In case you missed it, read the […]
Brain-Computer Interfaces: Privacy and Ethical Considerations for the Connected Mind
BCIs are computer-based systems that directly record, process, analyze, or modulate human brain activity in the form of neurodata that is then translated into an output command from human to machine. Neurodata is data generated by the nervous system, composed of the electrical activities between neurons or proxies of this activity. When neurodata is linked, or reasonably linkable, to an individual, it is personal neurodata.
FPF and Leading Health & Equity Organizations Issue Principles for Privacy & Equity in Digital Contact Tracing Technologies
With support from the Robert Wood Johnson Foundation, FPF engaged leaders within the privacy and equity communities to develop actionable guiding principles and a framework to help bolster the responsible implementation of digital contact tracing technologies (DCTT). Today, seven privacy, civil rights, and health equity organizations signed on to these guiding principles for organizations implementing […]