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The Turing Way

  • Welcome
  • Guide for Reproducible Research
    • Overview
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      • Added Advantages
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      • Resources
    • Open Research
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      • Open Source Software
      • Open Hardware
      • Open Access
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      • Checklist
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    • Version Control
      • General Workflow
      • Getting Started with Git
      • Git Commit Command
      • Retrieving and Comparing Versions
      • Git Branches
      • Merging Branches in Git
      • Interactive, Visual Git
      • Git Commands to Work on GitHub
      • Summary Table of Git Commands
      • Version Control for Data
      • Personal Stories
      • Checklist
      • Resources
    • Licensing
      • Software Licenses
      • Data Licenses
      • Machine Learning Model Licenses
        • Case Studies: Choosing an ML License
      • License Compatibililty
      • Checklist
    • Research Data Management
      • Research Data
      • Data Management Plan
      • The FAIR Principles and Practices
      • Personal data management
      • Data Storage and Organisation
      • Data Organisation in Spreadsheets
      • Documentation and Metadata
      • Data Curation
      • Sharing and Archiving Data
      • Data Article
      • Research Data Management Toolkits
      • Personal Impact Stories
      • Checklist
      • Resources
    • Reproducible Environments
      • Capturing Computational Environments
      • Package Management Systems
      • YAML
      • Virtual Machines
      • Containers
      • Resources and Checklist
    • BinderHub
      • Introduction to BinderHub
      • Compute Resources
      • Build Your Own BinderHub
      • Resources for BinderHub
    • Code quality
      • Code Style and Formatting
      • Checklist and Resources
    • Code Testing
      • General Guidance for Testing
      • Overview of Testing Types
      • Smoke Testing
      • Unit Testing
      • Integration Testing
      • System Testing
      • Acceptance and Regression Testing
      • Runtime Testing
      • Test Driven Development
      • Challenges and Exceptional Cases
      • Checklist for Code Testing
      • Further Recommendations
    • Code Reviewing Process
      • Motivation for code reviewing
      • Recommendations for code reviewing
      • Code review workflow
      • Checklist for code reviewing
      • Resources for code reviewing
    • Reusable Code
      • Overview of Code Reuse
      • Detailed Recommendations for Code Reuse
    • Continuous Integration (CI)
      • Intro to Continuous integration (CI)
      • Getting started with GitHub actions
      • Building a Block of a GitHub actions
      • Best practices and recommendations
      • Checklist and Resources
    • Reproducible Research with Make
      • Learn "Make" by examples
      • Debugging Makefiles
      • Case Study of a Reproducible Paper
      • Including numerical results and tables
      • Resources for "Make"
      • Appendix
    • Research Compendia
    • Risk Assessment
      • Complexity and Impact of Risk Assessment
      • Summary of Risk Assessment
    • Case Studies
      • A Statistical Methods Manuscript
  • Guide for Project Design
    • Overview of Project Design
      • Planning for Project Design
      • Communication and Collaboration
      • Reproducibility Methods
      • Version Control and Documentation
      • Sharing Your Research Work
    • Creating Project Repositories
      • Landing Page - README File
      • Roadmapping
      • Contributors and Communication Pathways
      • Participation Guidelines
      • Advanced Structure for Data Analysis
      • Further Recommendations
    • Personas and Pathways
      • Persona Creation Tool
      • Contributor Pathways
    • File Naming Convention
    • Code Styling and Linting
      • Guidelines for Code Styling
      • Writing Human Readable Code
      • Code Styling Tools
    • Sensitive Data Projects
      • Types of Sensitive Data
      • Personal Data
      • Confidential Data
      • Biological Data
      • Metadata
      • Combined Datasets
    • Managing Sensitive Data Projects
      • Informed consent
      • Data Privacy Strategies
      • Sharing Sensitive Data
      • Resources
    • Working on Sensitive Data Projects
      • Working with Trusted Research Environments
      • Privacy Preserving Machine Learning
      • Keeping Sensitive Files Secure
      • Sharing Your Jupyter Notebook
      • Removing Sensitive Data From GitHub
      • Further Recommendations
  • Guide for Communication
    • Overview of Guide for Communication
      • Principles of Communicating with Wider Audiences
      • Communicating Accessibly
      • Resources and Recommendations
    • Open Scholarship
      • Open Education
    • Blogs for Research Communication
      • Building a Webpage for Blogs
      • Personal stories - Blogs
    • Lay Summaries
      • Personal Stories - Lay summaries
    • Podcasts for Research Communication
      • Personal Stories - Podcasts
    • Presenting Posters and Conference Talks
      • Presenting at Remote Events
      • Personal stories - Presenting Outside of Your Discipline
    • Social Media for Research Communications
      • Tips for starting with twitter
      • Managing multiple twitter accounts
    • Research Objects in Action
      • Lifecycle
      • Implementation
    • Making Research Objects Citable
      • Steps for Making Research Objects Citable
      • Citing Research Objects
      • Software citation with CITATION.cff
      • Create a CITATION.cff using CFFinit
      • Linking Research Objects
      • ORCID to Collect your Research Objects
      • Checklists and Resources
    • Publishing Different Article Types
      • Data Papers
      • Methods Papers
      • Micropublishing
      • Registered Reports
      • Software Papers
    • Communications in Open Source Projects
      • Issue Tracking
      • Communication Channels
    • Authorship and Contributions on Academic Articles
      • Overview of Academic Authorship
      • Types of Authorship Misconduct
      • Discipline Specific Authorship Traditions
      • Large and Equitable Authorships
      • Tips on How to Get Authorship Right
      • Personal Stories - Authorship on Interdisciplinary Projects
      • Personal Stories - Large Collaborative Research Community
      • Resources
    • Peer Review
      • Peer Review
      • Open Peer Review
      • Guidance on Peer Review for a Journal
      • Guidance on Code Review
      • Resources
    • Binder
      • Zero-to-Binder
  • Guide for Collaboration
    • Getting Started With GitHub
      • Motivation for Using GitHub
      • First steps on GitHub
      • Using more GitHub features
      • Advanced GitHub features
    • Maintainers and Reviewers on GitHub
      • Project Maintenance
      • Ownership and Permissions
      • Reviewing Contributions
      • Merging Contributions
      • Resources
    • Organising Meetings
    • Organising Online Coworking Calls
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    • Chairing Events
    • Participating in Events
    • Informal Coffee Chats
    • Tools for Facilitating Collaboration
    • Managing a New Community and Team
      • Guide to Planning a Community
      • Addressing Technical Issues
      • Valuing Diversity and Differences
      • Teamwork
    • Leadership in Data Science
      • Personal Stories of Leadership
    • Research Infrastructure Roles
      • Community Managers Overview
      • Data Stewards Overview
      • Data Steward Personal Story
      • Data Wrangler Overview
      • Research Software Engineers Overview
      • Research Software Engineering Personal Story
      • Research Application Manager Overview
      • Research Infrastructure Developer Overview
    • Remote Collaboration
      • Pros and Cons
      • Guidelines for Remote Collaboration
      • Managing Distributed Teams
      • Useful Resources
    • Shared Ownership in Open Source Projects
      • Project Ownership
      • Shared Ownership Models
      • Challenges with Applying Ownership Models Retroactively
      • Nudging for a Better Default
    • Sustainability of Open Source Projects
  • Guide for Ethical Research
    • Introduction to Research Ethics
    • Research Ethics Committees Workflows
    • Ethical Decisions in Preclinical Research
    • Law, Policy and Human Rights in Ethics
      • Ethics and law
      • Human rights
      • Further Recommendations
    • Research Ethics for Social Data
    • Activism for Researchers
      • Unionisation
      • Whistleblowing
      • Cultural change
      • Case study - Robodebt
      • Case study - Google Workers
    • Internal Policy Advocacy
    • Self-Reflection
      • Identity and Positionality
      • Power and Privilege
      • Self-Reflection Prompts
      • Resources
    • Ethical Considerations for Open Source Governance Models
  • Community Handbook
    • Code of Conduct
      • Code of Conduct in Detail
      • Incident Reporting Guideline
      • Enforcement Manual
      • Acknowledgements
    • Style Guide
      • Citing and Referencing External Resources
      • Cross-Referencing Sections and Chapters
      • Using Figures
      • Glossary, Special Blocks and More Styling
      • Custom Styling
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    • Build the Turing Way Book locally
    • Contributing and Developing Chapters - Templates and Workflow
      • Templates
      • Workflow
    • Acknowledging Contributors
      • Community Members and Shared Ownership
      • Record of Contributions
      • Different Contributions and Acknowledgements
    • Monthly Newsletters
      • A Process of Creating a newsletter
      • Newsletter's Style Guide
      • The Turing Way Newsletter Template
    • Book Dash Events
      • Application and Review Process
      • Book Dash Logistics
      • Working With an Illustrator
      • Participant Selection Process
      • Book Dash Main Event Plans
      • After the Book Dash
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      • Background, Motivations, and Techniques
      • Online Collaboration Cafe
      • Weekly Coworking Calls
      • Organising coworking calls
    • Fireside Chat Series
      • Fireside Chat Planning Checklist
      • Fireside Chat Roles and Responsibilities
    • Giving a Turing Way Talk
    • Template Collection
      • Book Dash Main Shared Document
      • Book Dash Pre-event Onboarding
      • Book Dash GitHub Session
      • Book Dash Template for Shared Notes
      • Book Dash Template for Feedback
      • Online Collaboration Cafe Templates
      • Weekly Coworking Call Template
      • Template for Drafting Newsletters
      • Template for Fireside Chat Shared Notes
  • Afterword
    • Legal Disclaimer
    • Glossary
    • Bibliography
    • Record of Contributions
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Contents
  • Additional resources and templates

Informed consent

Contents

  • Additional resources and templates

Informed consent#

Informed, voluntary and fair consent to participate in a study is very important for any research project that involves human participants. It is through this consent process that research participants can understand what taking part in a specific study will mean for them, and how their data will be handled during the research project. Each person can then choose whether to participate using the consent form. See also the Guide for Ethical Research.

Note that the informed consent form is considered to be personal data and should therefore be handled with the same care as other personal data. Do not store the consent forms where you store the rest of the data you collect; use a separate locked cabinet or an encrypted folder for example.

In case you cannot use a written consent form, try to make a recording of verbal consent.

Consent documentation should include:

  • a participant information sheet and

  • a consent form signed by the participant.

The participant information sheet is used to inform participants about the study. The information should be clear and easy to understand and should cover the following:

  • What the project is about.

  • What their participation will involve and what (types of) data you will be collecting.

  • Any risks involved for participants and safeguards to minimise those risks.

  • Assurances about data security and participant confidentiality.

    • Mention who has access to the data.

  • How the data will be used in the study (for published articles, reports and presentations).

  • Proposed plans for archiving data at the end of the study and potential future secondary re-use of data.

    • Tiered consent may be a solution here, by allowing the participants to choose what type of information will be shared for re-use.

  • If you work under the General Data Protection Regulation (GDPR), describe participants’ rights and how they can exercise those rights, such as the right to data erasure and the right to contact the institution’s Data Protection Officer (if present).

  • Details of the organisation overseeing the research.

  • Whom to contact for more information about the study.

The consent form is used to verify that the research participant understands and agrees to participate in the study. The consent form should cover the following points at a minimum:

  • The participant

    • has read and understood the participant information sheet

    • has been given the opportunity to ask questions

    • understands that participation is voluntarily

    • understands that they may withdraw from the study at any time without giving reasons and without penalty

    • understands how the data will be managed, shared and archived (as detailed in the information sheet)

      • to increase the chance of your data to be re-used, do not promise to delete the data but instead ask for consent to retain and share the data (see [Mey18])

  • An action of providing consent. This is often a signatures of both the participant and the researcher, and the date of signing. However, ticking a simple check box can sometimes also suffice, depending on the type of research.

Think ahead and plan how you will:

  • collect, store and manage the data (see Data storage and organisation)

  • control access permissions

  • prepare data for archiving/sharing at the end of the project if possible (see Sharing and archiving data)

Additional resources and templates#

  • Data User Agreement, Open Brain Consent

  • Ultimate consent form, Open Brain Consent

  • Ultimate consent form - GDPR edition, Open Brain Consent

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Managing Sensitive Data Projects

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Data Privacy Strategies

By The Turing Way Community

The Turing Way Community makes all of their materials publicly available under open source licenses