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.
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 […]
FTC Requires Algorithmic Disgorgement as a COPPA Remedy for First Time
On March 4, the Federal Trade Commission (FTC) and Department of Justice (DOJ) announced a settlement agreement with WW International and its subsidiary, Kurbo (Kurbo by WW), after charging the companies with violating the Children’s Online Privacy Protection Act (COPPA) for improperly collecting health information and other data from children as young as eight years […]
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 & Data Protection: Understanding the Technology and Data Flows
This post is the first 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. Additionally, FPF-curated resources, including policy & regulatory […]
FPF in 2021: Delivering Privacy Insights & Expert Analysis
With the last days of 2021 upon us, we wanted to take a moment to reflect on this exciting year that saw FPF expand its presence both domestically and around the globe, while producing engaging events, thought-provoking analysis, and insightful reports with real-world impact. Growing Global Expertise The scope of FPF’s international work continued to […]
Organizations must lead with privacy and ethics when researching and implementing neurotechnology: FPF and IBM Live event and report release
A New FPF and IBM Report and Live Event Explores Questions About Transparency, Consent, Security, and Accuracy of Data The Future of Privacy Forum (FPF) and the IBM Policy Lab released recommendations for promoting privacy and mitigating risks associated with neurotechnology, specifically with brain-computer interface (BCI). The new report provides developers and policymakers with actionable […]
FPF Files Comments on CPRA Initial Rulemaking
Yesterday, the Future of Privacy Forum filed comments with the California Privacy Protection Agency on the initial rulemaking under the California Privacy Rights Act (CPRA). The CPRA, which comes into effect in 2023, provides protections for sensitive personal information, expands the California Consumer Privacy Act’s opt-out rights, and requires businesses to provide mechanisms for individuals […]
Event Report: From “Consent-Centric” Frameworks to Responsible Data Practices and Privacy Accountability in Asia Pacific
On September 16, the Asia-Pacific office of the Future of Privacy Forum (FPF) held its first event following its launch in August 2021. This event was hosted by the Personal Data Protection Commission (PDPC) of Singapore during the very popular “Personal Data Protection week” (PDP Week 2021). The theme of the event was Exploring trends: […]
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.