About this Issue

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.

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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.

Highlights Include:

  • FPF is convening a working group of stakeholders to discuss novel data use cases, identify opportunities, and address challenges toward the responsible and beneficial uses of data for health research and care management. Part of this working group effort involves a review of FPF’s “A Taxonomy of Definitions for the Health Data Ecosystem” to ensure that it reflects novel data use cases presented and discussed by the working group.
  • FPF developed a White Paper with Privacy Analytics, an IQVIA company, regarding the re-identification challenges currently facing genetic data. The paper highlights potential re-identification risks and new technologies that could help mitigate such challenges and outlines a practical path forward. The paper is slated for release in early 2020.
  • A set of privacy best practice principles for the collection, protection, sharing, and use of genetic data. FPF, along with consumer genetic and personal genomic testing companies 23andMe, Ancestry, Helix, MyHeritage, and Habit, released Privacy Best Practices for Consumer Genetic Testing Services. Supporters of these Best Practices also include African Ancestry, Living DNA, and the Association for Molecular Pathology.  
  • FPF sponsored the Refining Privacy to Improve Health Outcomes Symposium on October 26-27, 2017 in Durham, NC. The event — also sponsored by Intel Corporation, Information Accountability Foundation (IAF), Center for Democracy (CDT), University North Carolina at Chapel Hill, and Duke University, Triangle Privacy Research Hub — brought together leading experts in the fields of privacy, medicine, and data science to discuss how new technologies and data sources can improve health outcomes, while protecting individual privacy. The goal of the event was to propose specific law, policy, and practice changes to promote the more effective use of data for health research.

Working Group Meetings

Health Working Group meetings are generally held once per month. FPF members are welcome to join these discussions. If you would like call-in information (or to be added to the working group), please contact Katelyn Ringrose at [email protected].

Privacy Best Practices for Consumer Genetic Testing Services
Spotlight

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.

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What's Happening: Health

Artificial Intelligence and the COVID-19 Pandemic
Top Story

May 7, 2020 | Dr. Sara Jordan

Artificial Intelligence and the COVID-19 Pandemic

By Brenda Leong and Dr. Sara Jordan Machine learning-based technologies are playing a substantial role in the response to the COVID-19 pandemic. Experts are using machine learning to study the virus, test potential treatments, diagnose individuals, analyze the public health impacts, and more. Below, we describe some of the leading efforts and identify data protection […]

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FamilyTreeDNA Agreement with FBI Creates Privacy Risks
Top Story

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 […]

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

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).

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