FPF Archive

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 | Melanie E. Bates

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.