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.
Apple & Google Update Terms for COVID-19 Apps
While the legislative process for COVID-related data is advancing, the business and platform standards for apps are falling in place. Rules for All COVID Apps In response to the coronavirus pandemic, developers are rushing to create applications to support healthcare systems, spread awareness in the community, guide epidemiological research, and mitigate the spread. Apple and […]
Newly Released COVID-19 Privacy Bills Would Regulate Pandemic-Related Data
By Pollyanna Sanderson (Policy Counsel), Stacey Gray (Senior Policy Counsel) & Katelyn Ringrose (Christopher Wolf Diversity Law Fellow) Yesterday afternoon, leading House and Senate Democrats introduced the Public Health Emergency Privacy Act. The Democratic-led bill, which was introduced by Senators Blumenthal and Warner, as well as Representatives Eshoo, Schakowsky and DelBene, follows the May 10th […]
Artificial Intelligence and the COVID-19 Pandemic
By Brenda Leong and Dr. Sara Jordan Machine learning-based technologies are playing a substantial role in the response to the COVID-19 pandemic. Experts are using machine learning to study the virus, test potential treatments, diagnose individuals, analyze the public health impacts, and more. Below, we describe some of the leading efforts and identify data protection […]
FPF Submits Comments to NIH on the NIH-Wide Strategic Plan for Fiscal Years 2021-2025
Earlier this month, the Future of Privacy Forum (FPF) submitted comments to the National Institutes of Health (NIH) on the NIH-Wide Strategic Plan covering fiscal years 2021-2025. In the letter, Health Policy Counsel Rachele Hendricks-Sturrup and Artificial Intelligence Policy Counsel Sara Jordan propose the addition of a cross-cutting theme to NIH’s strategic plan as well […]
FPF and Privacy Analytics Identify “A Practical Path Toward Genetic Privacy”
Paper highlights de-identification standards, re-identification research, and emerging technical, contractual, and policy protections that can safeguard genetic data while supporting research. Genomic data is arguably the most personal of all personally identifiable information (“PII”). Techniques to de-identify genomic data to limit privacy and security risks to individuals–while that data is used for research and statistical […]
A Closer Look at Genetic Data Privacy and Nondiscrimination in 2020
Florida lawmakers recently introduced HB 1189/SB 1564 – a bill that would prohibit life and long-term care insurers from basing coverage and rates or denying coverage based on individuals’ genetic information. Washington State lawmakers are considering a bill, HB 2485, that would prohibit life insurance companies and others from obtaining individuals’ genetic information from direct-to-consumer […]
Questions to Ask Before You Buy a Genetic Testing Kit on Black Friday
By Rachele Hendricks-Sturrup and Katelyn Ringrose On Black Friday and Cyber Monday, millions of consumers will hurry to their nearest doorbuster sale or boot up their favorite sales portal to buy a price-slashed consumer genetic testing kit. Some genetic testing kits will be up to half off this year, and the market as a whole […]
FPF Expands Health Privacy Initiative
FPF is delighted to announce that Dr. Rachele Hendricks-Sturrup has joined the staff as health policy counsel, strengthening FPF’s commitment to supporting the data protection and ethics guidelines needed for health data. In this role, Rachele will work with stakeholders to advance opportunities for data to be used for research and real world evidence, improve patient […]
FPF and IAF Release "A Taxonomy of Definitions for the Health Data Ecosystem"
Healthcare technologies are rapidly evolving, producing new data sources, data types, and data uses, which precipitate more rapid and complex data sharing. Novel technologies—such as artificial intelligence tools and new internet of things (IOT) devices and services—are providing benefits to patients, doctors, and researchers. Data-driven products and services are deepening patients’ and consumers’ engagement, and […]
Consumer Genetic Testing: A Q&A with Carson Martinez
Carson Martinez is FPF’s Health Policy Fellow. She works on privacy challenges surrounding health data, particularly where it is not covered by HIPAA, as is the case with consumer-facing genetics companies, wearables, mobile health and wellness applications, and connected medical devices. Carson also leads the FPF Genetics Working Group and Health Working Group. How did […]