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 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 […]
The Israel Tech Policy Institute: A Discussion with Limor Shmerling Magazanik
While Israel’s image as the “Start-up Nation” is well known in tech circles, the country has lacked a central organization capable of promoting the same level of thought leadership on tech policy and privacy issues. The launch of the Israel Tech Policy Institute (ITPI) in June 2018 ensured that this is no longer the […]
FPF Comments on the California Consumer Privacy Act (CCPA)
On Friday, the Future of Privacy Forum submitted comments to the Office of the California Attorney General (AG), Xavier Becerra. Read FPF’s Full Comments (11-page letter) See Attachment 1: Comparing Privacy Laws: GDPR vs. CCPA See Attachment 2: A Visual Guide to Practical De-identification In FPF’s outreach to the AG, we commended the office for its […]
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 […]
Artificial Intelligence: Privacy Promise or Peril?
Understanding AI and its underlying algorithmic processes presents new challenges for privacy officers and others responsible for data governance in companies ranging from retailers to cloud service providers. In the absence of targeted legal or regulatory obligations, AI poses new ethical and practical challenges for companies that strive to maximize consumer benefits while preventing potential harms.
FamilyTreeDNA Agreement with FBI Creates Privacy Risks
Company’s Deal with Law Enforcement Surprises Consumers and Is Out-of-Step with Industry Norms and Best Practices By John Verdi and Carson Martinez Last week, FamilyTreeDNA announced an agreement with the FBI to allow agents to test DNA samples from crime scenes, develop genetic profiles, and identify familial matches. This agreement marks the first time a […]
FPF at 10: Envisioning the Future of Privacy
This year, Future of Privacy Forum is celebrating our tenth anniversary as a catalyst for privacy leadership and scholarship. In recognition of this milestone, we will host an anniversary celebration on April 30 and release a report on rising privacy issues. We also are publishing a series of blog posts over the next several weeks […]
FPF, EFPIA, and CIPL Workshop Report Now Available: "Can GDPR Work for Health Scientific Research?"
On October 22, 2018, the Future of Privacy Forum (FPF), the European Federation of Pharmaceutical Industries and Associations (EFPIA), and the Centre for Information Policy Leadership (CIPL) hosted a workshop in Brussels, “Can GDPR Work for Health Scientific Research?” to discuss the processing of personal data for scientific research purposes under the European Union’s General Data Protection Regulation (GDPR).
A New Year’s Resolution For Your New Devices
A New Year’s Resolution For Your New Devices Still thinking about your New Year’s resolutions? If so, the Future of Privacy Forum has a practical suggestion: Get to know the privacy implications of your new electronics. Early in the New Year, take a few moments to set up privacy features so you can be comfortable […]
New Resource on FERPA's Health and Safety Emergency
The Future of Privacy Forum has released a new guide, Disclosing Student Information During School Emergencies: A Primer for Schools, which offers four best practices for information disclosure and answers five frequently asked questions about FERPA’s requirements for sharing information during health or safety emergencies. Read more about this guide in the Future of Privacy Forum’s […]