Best Practices for Ethical Data Handling

Overview

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One of the key challenges of biomedical research and public health research is dealing with and managing the explosion of data from multiple sources. This course is designed to help researchers and investigators to understand the key ethical principles of data management from a privacy, security, usability and discoverability perspective. The course provides a historical perspective with an emphasis on current data ethics challenges in the age of date sharing and informatics. Unique features of this course: - Provides a concise summary of human research ethics from a biomedical/public health perspective - Practical everyday tips - Historical context of current concerns - Emphasis on current ethical concerns - Approachable explanations of technical concepts The content will help learners to more responsibly work with data for biomedical and public health research. Key Words Ethics, Data Sharing, Data Privacy, Data Security, Data Management Intended Audience - The course is intended for researchers and research staff who might be interested in learning about responsible practices for working with human data ethically Note: Some familiarity with biomedical or health-related research is recommended. Learning Objectives - Recognize and work with data that requires extra privacy protection - Implement best practices for data security - Share data safely and securely in a variety of contexts - Apply ethical consideration in data management workflows - Recognize current ethical concerns regarding data for research Accessibility We are committed to making our content accessible and available to all. We welcome any feedback you might have at https://forms.gle/SzuZjct4ZQyt3Cos7. Questions related to accessibility accommodations should be directed to https://studentserviceportal.force.com/s/. PDF versions of this course can be found at https://leanpub.com/courses/fredhutch/ethical_data_handling/. The fields of data ethics and bioethics are currently very dynamic with the rapid expansion of new technologies for data collection in biomedical and health-related research. This course helps learners understand the historical context of ethical guidelines, current suggestions, and practical tips to keep data safe and secure and strategies to respect and honor the contributions of research participants.

Syllabus

Introduction to data ethics and data privacy

In this module, we will introduce the course and the topics covered, as well as provide foundational background infromation about data privacy, including how to identify when data needs to be protected, the risks associated with data that requires protection, tips to maintain compliance with data protection policies, and strategies to protect sensitive data.

Data Security and Sharing

In this modual, we will start to describe more of the methods one can use to protect data, including de-identification, considerations for access and cached data, encryption, and safe email practices. We will also introduce topics related to data sharing, including why data sharing is helpful to the research community and the people we serve, data repositories for sharing data, and special considerations and tips for sharing data of different types.