About this Issue

FPF has pursued a combination of practical strategies and high-level thought leadership to address new opportunities and privacy risks presented by novel uses of personal information. FPF has centered its big data work on de-identification and data research ethics. FPF is also pursuing new work related to the benefits and risks of algorithmic decision-making and artificial intelligence.

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De-Identification: Legal rules for data should be calibrated depending on multiple gradations of identifiability and administrative controls should be credited as part of a responsible approach to de-identification efforts. FPF developed a practical framework for applying privacy protections based on the nature of data that is collected, the risks of re-identification, and the legal and administrative protections that may be applied. FPF is continuing to develop models that improve transparency and terminology around de-identification and that advance practical de-identification measures.

Highlights Include:
• FPF’s framework described in Shades of Gray: Seeing the Full Spectrum of Practical Data De-Identification, was published in the Santa Clara Law Review;
• FPF created a Visual Guide to Practical Data De-Identification.
• FPF held a workshop, Practical De-Identification to discuss what it means for data to be appropriately de-identified; • FPF held a forum, De-Identification: Practice and Policy, to discuss common uses of de-identification, implementation and best practices, and case studies; and
• FPF published Student Data and De-Identification: Understanding De-Identification of Education Records and Related Requirements of FERPA.

Ethics: FPF has called for new frameworks and standards to promote the ethical use of data for scientific research. Sponsored by the National Science Foundation and the Alfred P. Sloan Foundation, FPF held a day-long workshop to advance discussions of ethical review mechanisms for data collected in corporate, non-profit, and other non-academic settings. Workshop papers were published in Beyond IRBs: Ethical Review Processes for Big Data Research, an edition of the Washington & Lee School of Law’s online law review. FPF works with companies, civil society, and other thought leaders to identify ethical challenges posed by algorithmic decision-making and artificial intelligence, as well as potential solutions to promote fairness and mitigate the risk of algorithmic discrimination.

Brussels Privacy Symposium: FPF and the Vrije Universiteit Brussel established a joint program to develop and promote research, scholarship, and best practices to support beneficial uses of data while respecting individuals’ fundamental rights. The annual Brussels Privacy Symposium draws on the expertise of leading EU and US academics, industry practitioners, and policy makers to produce an annual workshop highlighting innovative research on emerging privacy issues. The Symposium launched in 2016 with an academic workshop titled Identifiability: Policy and Practical Solutions for Anonymization and Pseudonymization; the 2017 symposium will focus on the privacy implications of artificial intelligence.


Conference Proceedings – Beyond IRBs Designing Ethical Review Processes for Big Data Research

January 5, 2017 | Kelsey Finch

Conference Proceedings – Beyond IRBs Designing Ethical Review Processes for Big Data Research

Today, FPF is pleased to make available the Conference Proceedings from our Beyond IRBs: Designing Ethical Review Processes for Big Data Research workshop. The workshop, co-hosted by the Washington & Lee School of Law and supported by the National Science Foundation and the Alfred P. Sloan Foundation, aimed to identify processes and commonly accepted ethical principles for data research in academia, government and industry.

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What's Happening: Big Data

Consumer Genetic Testing: Beginning to Assess Privacy Practices
Top Story

May 31, 2017 | Jules Polonetsky

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.

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FPF Joins Leading Civil Society Groups, Academics and Companies to Participate in the Work of the Partnership on AI
FPF in Brussels: The Law and Science of De-Identification