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, 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?
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.
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.
Consumer Genetic Testing: Beginning to Assess Privacy Practices
Genetic testing is becoming more widely available to consumers; such testing can be an exciting new opportunity to help individuals flesh out family histories, discover cultural connections, and learn about their personal backgrounds. The availability of low-cost genetic sequencing and analysis has led to numerous businesses offering a variety of services, including some that provide detailed health and wellness reports that explain how genetics can influence risks for certain diseases. The enthusiastic public response demonstrates that there is great demand for this knowledge.
Mobile Apps Study Underscores Necessity of Strong Best Practices for Health and Wellness Data
Kelsey Finch, FPF Policy Counsel, presented FPF’s 2016 Mobile Apps Study at the Federal Trade Commission’s annual PrivacyCon on January 12, 2017. Kelsey presented a visual representation of the App Study designed by FPF Fellow, Carolina Alonso. See the visual.
FPF Statement on Privacy and Wearables
A new report released today by the Center for Digital Democracy and the School of Communications at American University focuses on privacy and wearables. As a recent HHS report made clear, the data collected by most wearables is not regulated to the same degree as information you provide to your doctor. But several mechanisms have ensured that many health and fitness apps respect users’ data – the leading app platforms impose strong privacy requirements, barring sale of sensitive data and requiring enhanced notice.
Future of Privacy Forum Releases Best Practices for Consumer Wearables and Wellness Apps and Devices
Washington, DC – Today, the Future of Privacy Forum (FPF) released Best Practices for Consumer Wearables and Wellness Apps and Devices, a detailed set of guidelines that responsible companies can follow to ensure they provide practical privacy protections for consumer-generated health and wellness data. The document was produced with support from the Robert Wood Johnson Foundation and incorporates input from a wide range of stakeholders including companies, advocates, and regulators.