Scientific research often requires access to personal information to unlock insights that will improve our world. For those insights to be trusted, however, it is essential that any personal information is processed in a lawful and ethical manner that respects privacy and security considerations. FPF engages stakeholders across academia and industry to produce best practices and ethical review structures that promote responsible research. We elevate and honor responsible research collaborations through our events and awards, including the FPF Award for Research Data Stewardship. All of our work is centered around the goal of streamlining, encouraging, and promoting responsible scientific research that respects essential privacy and ethical considerations throughout the process. FPF’s Ethical Data Use Committee (EDUC), for example, is an independent ethical review panel that reviews and evaluates the risks and benefits of organizations’ data-sharing projects with academic researchers. Finally, 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.
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 […]
Overcoming Hurdles to Effective Data Sharing for Researchers
In 2021, challenges faced by academics in accessing corporate data sets for research and the issues that companies were experiencing to make privacy-respecting research data available broke into the news. With its long history of research data sharing, FPF saw an opportunity to bring together leaders from the corporate, research, and policy communities for a conversation […]
Data Sharing … By Any Other Name
There are many different uses of the term “data sharing” to describe a relationship between parties who share data from one organization to another organization for a new purpose. Some uses of the term data sharing are related to academic and scientific research purposes, and some are related to transfer of data for commercial or government purposes. ..it is imperative that we are more precise which forms of sharing we are referencing so that the interests of the parties are adequately considered, and the various risks and benefits are appropriately contextualized and managed.
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.
Blog Summary: Ethical Concerns and Challenges in Research using Secondary Data
Digital data is a strategic asset for business. It is also an asset for researchers seeking to answer socially beneficial questions using company held data. Research using secondary data introduces new challenges and ethical concerns for research administrators and research ethics committees, like IRBs. FPF Senior Researcher, AI & Ethics, Dr. Sara Jordan, analyzes some […]
Stanford Medicine & Empatica, Google and Its Academic Partners Receive FPF Award for Research Data Stewardship
The second-annual FPF Award for Research Data Stewardship honors two teams of researchers and corporate partners for their commitment to privacy and ethical uses of data in their efforts to research aspects of the COVID-19 pandemic. One team is a collaboration between Stanford Medicine researchers led by Tejaswini Mishra, PhD, Professor Michael Snyder, PhD, and […]
Research from Stanford Medicine and Empatica, Inc: Early Detection of COVID-19 Using Empatica Smartwatch Data
Tejaswini Mishra, PhD, Michael Snyder, PhD, Erika Mahealani Hunting, Alessandra Celli, Arshdeep Chauhan, and Jessi Wanyi Li from the Stanford University School of Medicine’s Department of Genetics, and Empatica Inc. are the recipients of the second-annual FPF Award for Research Data Stewardship. The collaboration between the research team from Stanford Medicine and Empatica, a medical […]
Google: COVID-19 Community Mobility Reports
Google has been recognized with the second-annual FPF Award for Research Data Stewardship for its work to produce, aggregate, anonymize, and share data on community movement during the COVID-19 pandemic. Google’s Community Mobility Reports go through a robust anonymization process that employs differential privacy techniques to ensure that personal data, including an individual’s location, movement, […]
Automated Decision-Making Systems: Considerations for State Policymakers
In legislatures across the United States, state lawmakers are introducing proposals to govern the uses of automated decision-making systems (ADS) in record numbers. In contrast to comprehensive privacy bills that would regulate collection and use of personal information, automated decision-making system (ADS) bills in 2021 specifically seek to address increasing concerns about racial bias or […]
Supporting Responsible Research and Data Protection
Scientific research is often dependent on access to personal information, whether collected directly from individuals or collected for a real-world use and then accessed for research. For research to be trusted, processing of personal information must be lawful, ethical and subject to privacy and security protections. Supporting responsible research is a priority for FPF: Data […]