Ethical Data Handling for Cancer Research (The Course)
Course Info
This course includes 1 attempt.
This course is part of a series of courses for the Informatics Technology for Cancer Research (ITCR) called the Informatics Technology for Cancer Research Education Resource. This material was created by the ITCR Training Network (ITN) which is a collaborative effort of researchers around the United States to support cancer informatics and data science training through resources, technology, and events. This initiative is funded by the following grant: National Cancer Institute (NCI) UE5 CA254170. Our courses feature tools developed by ITCR Investigators and make it easier for principal investigators, scientists, and analysts to integrate cancer informatics into their workflows. Please see our website at www.itcrtraining.org for more information. Except where otherwise indicated, the contents of this course are available for use under the Creative Commons Attribution 4.0 license. You are free to adapt and share the work, but you must give appropriate credit, provide a link to the license, and indicate if changes were made. Sample attribution: Data Management for Cancer Research by Johns Hopkins Data Science Lab (CC-BY 4.0). You can download the illustrations by clicking here.
This course aims to provide research leaders with guidance about:
1) The risks of personal identifiable information and personal health information.
2) Tips for HIPAA compliance and methods of de-identification.
3) Cancer data types that are potentially re-identifiable.
4) Major methods of data security and practical everyday tips.
5) Tips about sharing cancer research data, including relevant repositories.
6) The general history of medical research ethics and how that influences research today.
7) Current and potential concerns for medical research ethics.
8) Strategies to protect and respect research participants.
This course is intended for researchers (including investigators, postdocs and students) with limited to intermediate experience with informatics research. The conceptual material will also be useful for those in management roles who are collecting data and using informatics pipelines.
Students will be graded based on their performance on short multiple choice quizzes.
Course Material
- 1 Introduction
- 2 Data Privacy
- Data Privacy10 attempts allowed
- 3 Data Security
- Data Security10 attempts allowed
- 4 Data Sharing
- Data Sharing10 attempts allowed
- 5 Data Ethics
- Data Ethics10 attempts allowed
- 6 Current Data Concerns
- Current data concerns10 attempts allowed
- About this course
- About the Authors
- References
Instructors
Carrie Wright is a Senior Staff Scientist at the Fred hutchinson Cancer Center and a member of the Fred Hutchinson Data Science Lab. Previously Carrie was an Assistant Scientist in the Department of Biostatistics at the Johns Hopkins Bloomberg School of Public Health and a faculty member of the Johns Hopkins Data Science Lab. Her work focuses on making data science and informatics more approachable and accessible. She is also a faculty member of the open case studies project, the Informatics Technology for Cancer Research (ITCR) Training Network (ITN), and a co-founder of the LIBD rstats club, a community designed to encourage others to learn more about R programming and statistics. Learn more about Carrie at https://carriewright11.github.io/.
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