Research often requires using sensitive data to answer important questions. The ethical collection and analysis of personal information can be challenging to do while still protecting the privacy of the implicated individuals, honoring informed consent, and complying with other legal obligations. The technology, policies, and ethical considerations for researchers are constantly shifting, sometimes making it difficult to keep up. That’s why FPF engages stakeholders across academia and industry to produce recommendations, best practices, and ethical review structures that promote responsible research. Our work is centered around streamlining, encouraging, and promoting responsible research that respects essential privacy and ethical considerations throughout the research lifecycle. FPF works with policymakers to develop legislative protections that support effective, responsible research with strong privacy safeguards, including hosting events that allow policymakers and regulators to engage directly with practitioners from academia, advocacy, and industry.
FPF also has an Ethics and Data in Research Working Group. This group receives late-breaking analysis of emerging legislation affecting research and data, meets to discuss the ethical and technological challenges of conducting research, and collaborates to create best practices to protect privacy, decrease risk, and increase data sharing for research, partnerships, and infrastructure. Learn more and join here.
AI Forward: FPF’s Annual DC Privacy Forum Explores Intersection of Privacy and AI
The Future of Privacy Forum (FPF) hosted its inaugural DC Privacy Forum: AI Forward on Wednesday, June 5th. Industry experts, policymakers, civil society, and academics explored the intersection of data, privacy, and AI. In Washington, DC’s southwest Waterfront at the InterContinental, participants joined in person for a full-day program consisting of keynote panels, AI talks, […]
The Significance of Inclusion in Clinical Trials and Medical Research Databases
Our colleagues at the Israel Tech Policy Institute (ITPI) published a thoughtful blog on the significance of diversity and inclusion in clinical trials and health and medical research databases. They discuss the imperative of being represented in data, for one’s existence to be recognized and considered. When such data is the building block for a […]
Brain-Computer Interfaces: Privacy and Ethical Considerations for the Connected Mind
BCIs are computer-based systems that directly record, process, analyze, or modulate human brain activity in the form of neurodata that is then translated into an output command from human to machine. Neurodata is data generated by the nervous system, composed of the electrical activities between neurons or proxies of this activity. When neurodata is linked, or reasonably linkable, to an individual, it is personal neurodata.
FPF Health and AI & Ethics Policy Counsels Present a Scientific Position at ICML 2020 and at 2020 CCSQ World Usability Day
On November 12, 2020, FPF Policy Counsels Drs. Rachele Hendricks-Sturrup and Sara Jordan presented privacy-by-design alongside human-centered design concepts during the 2020 CCSQ World Usability Day virtual conference. This presentation followed Drs. Hendricks-Sturrup’s and Jordan’s July 2020 scientific position paper presented at the International Conference on Machine Learning (ICML) 2020, entitled “Patient- Reported Outcomes: A Privacy-Centric and Federated Approach […]
FPF Submits Comments Regarding Data Protection & COVID-19 Ahead of National Committee on Vital and Health Statistics Hearing
Yesterday, FPF submitted comments to the National Committee on Vital and Health Statistics (NCVHS) ahead of a Virtual Hearing of the Subcommittee on Privacy, Confidentiality, and Security on September 14, 2020. The hearing will explore considerations for data collection and use during a public health emergency, in light of the deployment of new technologies for […]
FPF & BrightHive Release Playbook to Create Responsible Contact Tracing Initiatives, Address Privacy & Ethics Concerns
A new playbook from the Future of Privacy Forum (FPF) and BrightHive, Responsible Data Use Playbook for Digital Contact Tracing, provides a series of considerations to assist stakeholders in setting up a digital contact tracing initiative to track and manage the spread of COVID-19, while addressing privacy concerns raised by these technologies in an ethical, […]
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).