May 29, 2019 | Carson Martinez
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 […]
February 6, 2019 | FPF Staff
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 […]
December 10, 2018 | Carson Martinez
The HIPAA Privacy Rule 15 Years Later: What’s Next?
On December 4th, FPF, Intel, and Duke in DC hosted “The HIPAA Privacy Rule 15 Years Later: What’s Next?” The event brought together stakeholders across the health data ecosystem to explore the current challenges related to the Health Information Portability and Accountability Act (HIPAA) Privacy Rule. Specifically, the discussion focused on solutions to mitigate restrictions to data sharing in clinical care and research due to administrative burdens, while at the same time maintain the privacy of protected health information (PHI).
October 12, 2018 | FPF Staff
FPF Perspective: Limit Law Enforcement Access to Genetic Datasets
Today, researchers published a paper detailing how governments can use public genetic databases to identify criminal suspects. These activities raise real questions about when it’s appropriate for law enforcement to analyze genetic information, and how best to protect individuals whose genetic data has been analyzed as part of a commercial service, but who are not accused of a crime.
July 31, 2018 | Carson Martinez
Privacy Best Practices for Consumer Genetic Testing Services
The Best Practices provide a policy framework for the collection, protection, sharing, and use of Genetic Data generated by consumer genetic testing services. These services are commonly offered to consumers for testing and interpretation related to ancestry, health, nutrition, wellness, genetic relatedness, lifestyle, and other purposes.
July 31, 2018 | FPF Staff
Future of Privacy Forum and Leading Genetic Testing Companies Announce Best Practices to Protect Privacy of Consumer Genetic Data
Washington, DC – Today, Future of Privacy Forum, along with leading consumer genetic and personal genomic testing companies 23andMe, Ancestry, Helix, MyHeritage, and Habit, released Privacy Best Practices for Consumer Genetic Testing Services. The Best Practices provide a policy framework for the collection, protection, sharing, and use of Genetic Data generated by consumer genetic testing services. These services are commonly offered to consumers for testing and interpretation related to ancestry, health, nutrition, wellness, genetic relatedness, lifestyle, and other purposes.
August 17, 2016 | Melanie E. Bates
Future of Privacy Forum Releases Best Practices for Consumer Wearables and Wellness Apps and Devices