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.
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.
W&L Law Offers DC-based Cyber Law and Privacy Seminar with Future of Privacy Forum
The course, titled “Cyber Policy and Privacy Law,” will be co-taught by Professor Margaret Hu and Jules Polonetsky, CEO at FPF. The course will examine how the expanding role of the internet, big data, e-commerce, social media, and wearable technology has strained the preexisting regulatory and constitutional frameworks that have guided privacy protections under the law.
CEA releases guiding privacy & security principles for wearable technologies
Yesterday, October 26th, the Consumer Electronics Association (CEA) announced voluntary guidelines for organizations that manage personal and health-related data, particularly as generated by consumer wearable technologies. This step illustrates CEA’s attempt to promote consumer trust in technology companies producing and supporting health trackers and other wearable technologies.
Comments to the FTC on Consumer Generated Health Data
Today, the Future of Privacy Forum submitted comments to the FTC on the privacy issues surrounding consumer generated health data. Noting that innovative products and services that allow consumers to generate and manage their own health information are increasingly becoming part of how consumers manage their broader health care, FPF discusses the need for a […]