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.
Privacy and Pandemics: A Thoughtful Discussion
As the COVID-19 virus spreads, governments, researchers, and healthcare institutions are seeking to obtain and deploy consumer data to track the spread of the virus, deliver emergency supplies, target travel restrictions and quarantines, and develop vaccines and cures. But can data collected from phones, credit cards, and other sources be used in this emergency without […]
A Closer Look at Location Data: Privacy and Pandemics
In this series, Privacy and Pandemics, the Future of Privacy Forum explores the challenges posed by the COVID-19 crisis to existing ethical, privacy, and data protection frameworks, and will seek to provide information and guidance to companies and researchers interested in responsible data sharing to support public health response. Future posts will examine pandemic-tracking mobile […]
FPF and AASA Release Student Privacy Guidance to Help Schools Manage COVID-19 Response
Today, the Future of Privacy Forum (FPF) and AASA, The School Superintendents Association, released a new white paper that offers guidance to help K-12 and higher education administrators and educators protect student privacy during the COVID-19 pandemic.
EU DPAs Issue Green and Red Lights for Processing Health Data During the COVID-19 Epidemic
As Europe is grappling with an exponential increase in COVID-19 cases, some European Data Protection Authorities issued public interest guidance on the limits of collecting, sharing and using personal data relating to health in these exceptional circumstances. Particular areas of concern are related to the breadth of measures that employers can legally take to monitor […]
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 […]
Privacy 2020: 10 Privacy Risks and 10 Privacy Enhancing Technologies to Watch in the Next Decade
Today, FPF is publishing a white paper co-authored by CEO Jules Polonetsky and hackylawyER Founder Elizabeth Renieris to help corporate officers, nonprofit leaders, and policymakers better understand privacy risks that will grow in prominence during the 2020s, as well as rising technologies that will be used to help manage privacy through the decade. Leaders must understand […]
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 […]
Warning Signs: Identifying Privacy and Security Risks to Machine Learning Systems
FPF is working with Immuta and others to explain the steps machine learning creators can take to limit the risk that data could be compromised or a system manipulated.
NAI’s 2020 Code of Conduct Expands Self-Regulation for Ad Tech Providers
By Christy Harris, Stacey Gray, and Meredith Richards As debates over the shape of federal privacy legislation in the United States continue, online advertising remains a key focus of scrutiny in the US Congress, with its recent hearing on digital advertising and data privacy. Amidst these debates, the Networking Advertising Initiative (NAI), the leading self-regulatory body […]