“The Berkman Center is pleased to announce the publication of a new paper from the Privacy Tools for Sharing Research Data project team. In this paper, Effy Vayena, Urs Gasser, Alexandra Wood, and David O’Brien from the Berkman Center, with Micah Altman from MIT Libraries, outline elements of a new ethical framework for big data research.
Emerging large-scale data sources hold tremendous potential for new scientific research into human biology, behaviors, and relationships. At the same time, big data research presents privacy and ethical challenges that the current regulatory framework is ill-suited to address. In light of the immense value of large-scale research data, the central question moving forward is not whether such data should be made available for research, but rather how the benefits can be captured in a way that respects fundamental principles of ethics and privacy.
The authors argue that a framework with the following elements would support big data utilization and help harness the value of big data in a sustainable and trust-building manner:
Oversight should aim to provide universal coverage of human subjects research, regardless of funding source, across all stages of the information lifecycle.
New definitions and standards should be developed based on a modern understanding of privacy science and the expectations of research subjects.
Researchers and review boards should be encouraged to incorporate systematic risk-benefit assessments and new procedural and technological solutions from the wide range of interventions that are available.
Oversight mechanisms and the safeguards implemented should be tailored to the intended uses, benefits, threats, harms, and vulnerabilities associated with a specific research activity.
Development of a new ethical framework with these elements should be the product of a dynamic multistakeholder process that is designed to capture the latest scientific understanding of privacy, analytical methods, available safeguards, community and social norms, and best practices for research ethics as they evolve over time.
The full paper is available for download through the Washington and Lee Law Review Online as part of a collection of papers featured at the Future of Privacy Forum workshop Beyond IRBs: Designing Ethical Review Processes for Big Data Research held on December 10, 2015, in Washington, DC….(More)”