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.
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).
Genetic Testing Will Be the Talk of the Table this Thanksgiving
This Thanksgiving, as families gather around the dinner table and discuss heritage and history, genetic testing is sure to be on the menu. Genetic testing companies are offering Black Friday and Cyber Monday discounts on kits to help you discover your genealogy and are sure to report record sales.
Limor Shmerling Magazanik Joins Israel Tech Policy Institute as Managing Director and Future of Privacy Forum as Senior Fellow
Washington, DC – November 20, 2018 – The Israel Tech Policy Institute and Future of Privacy Forum today announced Limor Shmerling Magazanik as ITPI Managing Director and FPF Senior Fellow. In this role, Magazanik will provide leadership on day-to-day operational matters of ITPI, including directing ITPI’s policy agenda; engaging policymakers, regulators, academics, and business leaders; convening multi stakeholder groups for discussion; and overseeing communications with the public and the advisory board.
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 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
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.
PrivacyNews.TV
FPF uses Facebook Live to discuss timely topics. Watch some of our previous videos here and be sure to tune in live for our next discussion!
Policy Brief: European Commission’s Strategy for AI, explained
The European Commission published a Communication on “Artificial Intelligence for Europe” on April 24th 2018. It highlights the transformative nature of AI technology for the world and it calls for the EU to lead the way in the approach of developing AI on a fundamental rights framework. AI for good and for all is the motto the Commission proposes. The Communication could be summed up as announcing concrete funding for research projects, clear social goals and more thinking about everything else.
The Top 10: Student Privacy News (Feb – July 2018)
The Future of Privacy Forum tracks student privacy news very closely, and shares relevant news stories with our newsletter subscribers.* Approximately every month, we post “The Top 10,” a blog with our top student privacy stories.
FPF Testifies Before Federal Commission on School Safety
John Verdi, the Future of Privacy Forum’s Vice President of Policy, testified today before the Federal Commission on Student Safety meeting, “Curating a Healthier & Safer Approach: Issues of Mental Health and Counseling for Our Young.”