LibGuides: Guide to Oral History Interviews and Qualitative Fieldwork: Privacy and Ethical Considerations

Privacy and Ethical Considerations

Data Privacy and Informed Consent 🛡️

Protecting data privacy and obtaining informed consent are fundamental to ethical oral history and qualitative research. Informed consent not only fulfills legal and ethical responsibilities but also ensures participants are fully informed about their rights and the scope of their involvement. This tab outlines best practices for safeguarding data privacy and implementing informed consent in research.

It is important to note that each institution, repository, and publisher may have unique standards for privacy and informed consent. Be sure to consult the relevant point person or office for your specific project. If you need consent forms for a Utah State University Fife Folklore Archives-based project, contact the Curator for guidance.

1. What is Informed Consent?

Informed consent is both a process and documentation. It ensures participants are provided with all necessary information to make an educated decision about their participation, including:

The purpose and scope of the research.
How their data will be used, stored, and shared.
The risks and benefits of participation.
Their rights, including the right to withdraw at any time.

Consent must be informed, voluntary, and documented through either written or verbal means.

2. Elements of Informed Consent

Informed consent must include the following elements:

Purpose and Use of the Research: Clearly explain the goals of the project and how data will contribute to these goals.
Participation Details: Outline what is expected of participants, including the duration, activities, and any follow-ups.
Risks and Benefits: Highlight any potential risks (e.g., privacy concerns) and benefits (e.g., contributing to public knowledge).
Data Handling: Explain how recordings and transcripts will be stored, shared, and preserved, and clarify whether they will be anonymized or publicly accessible.
Withdrawal Rights: Emphasize that participation is voluntary and that participants can withdraw at any point without penalty.

3. Methods for Obtaining Consent

Written Consent

Standard for Most Research Projects: Consult your institution for relevant forms.
Documentation: Requires a signed form documenting the participant’s understanding and agreement.

Verbal Consent

Verbal consent is an alternative to written consent, often used in situations where cultural norms, practicality, or the nature of the study make obtaining a signature unnecessary or inappropriate. It ensures participants are fully informed while avoiding the formalities of written documentation.

When Verbal Consent is Appropriate

Cultural Sensitivity: In communities where signing documents is uncommon or inappropriate.
Logistical Challenges: Remote or time-sensitive interviews where written consent is impractical.
Low-Risk Studies: Research deemed minimal risk by the IRB, often with an exemption from formal documentation requirements.

Best Practices for Verbal Consent

Clearly Communicate Key Information: Explain the purpose of the study, how the data will be used, and participants’ rights, including their ability to withdraw at any time.
Record the Verbal Consent (Optional): If allowed by the IRB and culturally appropriate, consider recording the participant’s verbal consent at the beginning of the interview. Example: "Do you understand the purpose of this project and your rights as a participant? Do you agree to participate in this study?"
Note-Taking: Maintain internal notes summarizing when and how consent was obtained, especially for exempt studies where forms are not required.

When Documentation is Necessary

In some cases, verbal consent may still require supporting documentation:

Short Form: A brief document stating that the elements of informed consent were presented orally. This is typically signed by a witness if required by the IRB.
Written Summary: A detailed overview of what was explained during the verbal consent process, signed by the researcher and, if applicable, the participant.

4. Privacy Considerations During the Consent Process

Confidentiality:
- Allow participants to opt for anonymity or pseudonymity.
- Redact sensitive details upon request.
Data Security:
- Store signed forms securely, using encryption for digital files.
- Avoid sharing identifiable consent documents unless necessary.

5. Addressing Cultural and Contextual Nuances

Respect for Cultural Norms:
- Tailor the consent process to cultural expectations, such as using verbal consent in communities where written signatures are uncommon.
Special Considerations for Vulnerable Populations:
- Use simplified consent forms or supplemental materials (e.g., videos or infographics) to enhance understanding.
- For minors or individuals unable to provide consent, seek permission from legally authorized representatives (LARs).

6. Waivers and Alterations to Informed Consent

In some cases, the requirement for written consent can be waived or altered if:

Minimal Risk Research: The study poses minimal risk, and written consent is impractical.
Cultural Sensitivity: Collecting signatures would violate cultural norms.
Confidentiality Risks: The only link between participants and the study is the signed consent form, and its existence could pose a risk to privacy.

In these cases, researchers must document the steps taken to inform participants and ensure voluntary participation.

7. Best Practices for Informed Consent

Use Accessible Language: Avoid jargon; ensure forms and explanations are clear and easy to understand.
Interactive Consent Processes: Consider incorporating visual aids, videos, or Q&A sessions to enhance participant understanding.
Ongoing Consent: Recognize that consent is not a one-time event. Revisit consent if project goals or data use plans change.

Additional Resources 🔗

Storage Options 🗃️☁️

Properly storing and securing your research data is crucial to maintaining privacy, ethical integrity, and long-term usability. Whether you are working with audio recordings, transcripts, or sensitive participant information, choosing the right storage solutions will protect your data and ensure compliance with institutional and legal standards. If your institution has a digital stewardship team, be sure to consult them on these matters for expert guidance and support.

1. Principles of Secure Data Storage

Confidentiality: Limit access to data to only those authorized to view it.
Integrity: Ensure data remains accurate and unaltered.
Availability: Store data in a way that allows for reliable access when needed.

2. Recommended Storage Options

Depending on your resources and project needs, consider the following storage options:

A. Digital Storage

External Hard Drives
- Pros: Portable and offline; useful for storing backups.
- Cons: Prone to physical damage or loss if not properly secured.
- Best Practices: Use encrypted drives and store them in locked, secure locations.
Cloud Storage
- Examples: Google Drive, Dropbox, Microsoft OneDrive, or institutional repositories.
- Pros: Easy to access, share, and scale; often includes built-in encryption.
- Cons: Privacy concerns if using non-compliant platforms.
- Best Practices: Choose platforms that comply with data privacy laws (e.g., HIPAA, GDPR) and restrict sharing permissions.
Institutional Repositories
- Pros: Designed for research data storage; provides long-term access and security.
- Cons: May require additional training or permissions to use.
- Best Practices: Contact your institution’s IT, digital stewardship team, or library services for support.
Encrypted USB Drives
- Pros: Small and portable; useful for securely sharing files.
- Cons: Risk of loss; limited storage capacity.
- Best Practices: Use hardware-encrypted drives for sensitive data.

B. Physical Storage

Paper Records
- Pros: Useful for consent forms or handwritten notes.
- Cons: Vulnerable to physical damage, theft, or misplacement.
- Best Practices: Store in locked filing cabinets within secure offices.
Physical Media (e.g., CDs, DVDs, Tapes)
- Pros: Offline and tamper-resistant.
- Cons: Limited lifespan; requires specific hardware for access.
- Best Practices: Store in climate-controlled, secure environments.

3. Backup Strategies

To prevent data loss, follow the "3-2-1" rule for backups:

3 Copies: Maintain three copies of your data (e.g., primary storage, external drive, cloud storage).
2 Locations: Store data in at least two different locations (e.g., onsite and offsite).
1 Offsite Backup: Keep one backup in a geographically separate location (e.g., cloud storage or external drive stored elsewhere).

4. Data Redaction and Privacy Protection

Redacting Transcripts and Editing Audio:
- Redact sensitive information in transcripts, such as names, locations, or identifiers, when privacy concerns arise.
- Edit audio files to remove sections containing confidential details that participants wish to keep private.
- Ensure that redacted versions are clearly labeled as such.
Retaining the Original Files:
- Always retain the original, unaltered versions of transcripts and recordings for archival purposes.
- Store original files securely, ensuring limited access to authorized personnel only.
- Clearly document the redaction process to maintain transparency.

5. Data Encryption

Encrypt sensitive data to protect against unauthorized access:

For Digital Files:
- Use software such as VeraCrypt or BitLocker for encrypting local storage.
- Enable encryption for cloud storage platforms where supported.
For Physical Drives: Use drives with built-in hardware encryption.

6. Access Control

Password Protection: Require strong, unique passwords for all devices and storage platforms.
Role-Based Access: Limit data access to team members who need it, and regularly review permissions.
Audit Trails: Use tools or systems that log data access to monitor compliance.

7. Long-Term Storage

For data that needs to be preserved beyond the duration of the project:

Institutional Archives: Deposit research materials in an institutional repository that ensures long-term access and preservation.
Preservation Formats: Convert files to archival-friendly formats (e.g., WAV for audio, PDF/A for text).
Regular Maintenance: Periodically review and migrate data to current storage media or formats to prevent obsolescence.

8. Ethical Considerations

Participant Consent: Ensure your storage plan aligns with participants’ consent agreements, particularly regarding anonymization and access restrictions.
Sensitive Data: Take extra precautions when storing personally identifiable information (PII) or data from vulnerable populations.

Final Tips

Always follow your institution’s guidelines for data storage and security.
Test your backup and recovery processes to ensure reliability.
Regularly update software and hardware to minimize security vulnerabilities.
Consult Your Digital Stewardship Team: If your institution has a digital stewardship team, reach out to them for tailored advice and support regarding data storage, security, and long-term preservation.

If you’re working on a Utah State University Fife Folklore Archives project, contact the Curator for guidance on archival storage practices and repository options.

What is the IRB? 🏛️

IRB stands for Institutional Review Board. It is a committee established at universities and research institutions to review and approve research involving human subjects. The goal is to ensure that research is ethical, protects participants' rights, and complies with federal and institutional guidelines.

While not all projects require IRB approval, many institutions ask researchers to submit a protocol for review, even if your project seems low-risk or is considered Non-Human Subjects Research (NHSR), such as oral histories.

When Is IRB Approval Needed? 🤔

Institutional Review Boards (IRBs) are designed to protect research participants and ensure ethical standards are met. Whether or not your project requires IRB oversight depends on:

Whether the project qualifies as "human subjects research" (HSR) as defined by your institution and federal guidelines.
Whether the research is intended for public dissemination (e.g., publishing, conference presentation, deposit in a public archive).

Oral history is often considered not human subjects research (NHSR) if its purpose is to document specific individuals’ experiences, rather than to generalize findings. However, most institutions still recommend submitting a brief protocol or determination request to the IRB office for documentation.

Class Assignments vs. Research Projects 🎓📚✏️

Context	IRB Required?	Notes
Classroom project only	❌ Usually No	Talk to your instructor. Students may still need to obtain consent.
Capstone/thesis/dissertation	✅ Likely Yes	Submit IRB protocol or get formal NHSR determination.
Archival deposit/publication	✅ Yes	Most repositories require ethical clearance and informed consent.

What to Do 🚦

Check your institution’s guidelines: Each university has its own forms and IRB definitions.
Ask for a “not human subjects research” (NHSR) determination: Especially common in folklore, ethnomusicology, oral histories, and other kinds of qualitatively leaning cultural anthropology.
Err on the side of documentation: Even if IRB isn’t required, documenting your ethical approach builds trust and professionalism.

Utah State University students conducting research for public dissemination should consult the USU IRB Office or their advisor. Students doing fieldwork in partnership with the Fife Folklore Archives should contact the Curator for consent form templates and guidance.