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 help to improve health outcomes. It is critical to analyze how sensitive health and wellness data affects individual privacy and understand what it means for doctors, researchers, and companies to responsibly use such data.

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Building on FPF’s previous work regarding Consumer Wearables and Wellness Apps and Devices, FPF is exploring issues at the 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 HIPAA regulation, i.e. health and wellness data. 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 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.
  • FPF convened a Genetic Working Group, which consists of leading direct-to-consumer (DTC) genetics companies, to develop Privacy Principles for Genetic Data. These Principles provide a privacy policy framework for the collection, protection, sharing, and use of genetic data.
  • FPF is developing a White Paper with Privacy Analytics, an IQVIA company, regarding the re-identification challenges currently facing genetic data. The paper identities potential re-identification risks, highlights new technologies that could help mitigate such challenges, and outlines a practical path forward.
  • FPF has partnered with the Information Accountability Foundation (IAF) to form the FPF-IAF Joint Health Initiative to better understand the health data ecosystem by mapping the stakeholders in the field and the data flows between them, as well as creating a common language and taxonomy for data types. This project is maping novel data use cases and identifying opportunities and challenges to responsible and beneficial uses of data in health.
  • FPF is working with stakeholders to explore the promise and privacy implications of internet of things devices used by persons with disabilities. An FPF white paper will document the range of areas where data and technology offer benefits to persons with disabilities, how the disability community may have different views of how data and technology may be used to support their needs and goals, and circumstances in which disabled users may need enhanced or alternative privacy protections.

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 Carson Martinez 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

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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Genetic Testing Will Be the Talk of the Table this Thanksgiving
FPF Perspective: Limit Law Enforcement Access to Genetic Datasets
Top Story

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.

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