FPF Archive

The Blog

October 3, 2019 | Jules Polonetsky

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”
The Blog

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 […]

FamilyTreeDNA Agreement with FBI Creates Privacy Risks
The Blog

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 […]

FPF, EFPIA, and CIPL Workshop Report Now Available: “Can GDPR Work for Health Scientific Research?”
The Blog

January 9, 2019 | Carson Martinez

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).

The HIPAA Privacy Rule 15 Years Later: What’s Next?
The Blog

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).

FPF Perspective: Limit Law Enforcement Access to Genetic Datasets
The Blog

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.

Privacy Best Practices for Consumer Genetic Testing Services
The Blog

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.

Future of Privacy Forum and Leading Genetic Testing Companies Announce Best Practices to Protect Privacy of Consumer Genetic Data
The Blog

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.