This article focuses specifically on issues related to data-driven research, which is an area where the notion of harm is still hotly debated and both benefit and risk are typically intangible.
Research Ethics in the Big Data Era: Addressing Conceptual Gaps for Researchers and IRBs
by Michael Zimmer
This essay helps push forward the growing discourse on the ethics of big data research by disclosing critical conceptual gaps that often hamper how researchers and IRBs think about privacy, personal information, consent, and harm in the context of big data.
The IRB Sledge-Hammer, Freedom and Big-Data
by Curtis Naser
The application of the regulatory model of IRBs to research using big-data, particularly in the for-profit sector, raises a host of issues.
Architecting Global Ethics Awareness in Transnational Research Programs
by John Murray
Traditionally, the ethical principles that guide scientific studies involving people are primarily intended to cover direct human--‐centered research.
Classification Standards for Health Information: Ethical and Practical Approaches
by Craig Konnoth
Secondary research using health information is on the rise. Not all informational research presents equal burdens.
Selected Issues Concerning the Ethical Use of Big Data Health Analytics
by Lieke Jetten and Stephen Sharon
Privacy advocates have spent the better part of a decade teaching people that their data is precious and that once it’s online, it’s online forever.
Beyond IRBs: Designing Ethical Review Processes for Big Data Research
by Simson L. Garfinkel
Big Data Research is something new, a practice rooted in large-scale data collection that frequently combines aspects of research, experimentation, and entertainment.
Usable Ethics: Practical Considerations for Responsibly Conducting Research with Social Trace Data
by Jana Diesner and Chieh-Li Chin
Over the last decade, research on the privacy of user information has shown that often a) ordinary users pay little attention to privacy policies and b) when considering policies, people have a hard time understanding their meaning and practical implications
Ethics Review Process as a Foundation for Ethical Thinking
by Chris Clifton
The Institutional Review Board process, while not perfect, has been fairly effective in balancing the progress of research and protection to human subjects.
Emerging Ethics Norms in Social Media Research
by Katie Shilton
This paper argues that we should learn from practice: that researchers working with open and online datasets are converging around norms for responsible research practice that can help guide IRBs or alternative arrangements interested in regulating research ethics.