For many researchers, an important strategy for gathering information and generating data is interacting with, and often speaking directly with, people. Through ethnography and participant observation, interviewing, carrying out focus groups, and conducting surveys or experiments, researchers involve human beings of all ages and backgrounds in their work. Those people become “human participants” (or, in legal parlance, “research subjects”) in those scholars’ research projects.
QDR offers a series of web pages addressing key topics in human participant research:
- Principles of Human Participant Protection
- Institutional Review Boards (IRBs)
- Informed Consent
- Access Controls
If your work involves human participants, there are important questions related to interacting with those individuals that you should begin to consider from the early planning stages of your project. We offer here and on the pages linked below general guidance for safely and ethically collecting information from human participants, and for managing and potentially sharing that information. The specific questions that arise when research involves human participants, and the answers to those questions, vary by project. We encourage you to contact the Institutional Review Board(s) (IRBs) with jurisdiction over your project, and/or QDR, early in the development of your project if you anticipate or encounter unusual circumstances or are unsure about some aspect of collecting data from human participants or managing those data.
Principles of Human Participant Protection
Research with human participants should be guided by three ethical principles: respect, beneficence, and justice.
Institutional Review Boards (IRBs)
IRBs help to assure that research involving human participants protects those participants’ rights and welfare. If interacting with human beings is one of the strategies that you will employ to collect information for your research project, you need to seek approval for the project from the IRBs with jurisdiction over your work before you begin to conduct the research,
Seeking IRB approval entails evaluating the risk that participating in your project poses to all whom you may invite to participate. This risk often varies by participant. When the risk to all of the different types of human participants is minimal, you can request that your project be exempt from further IRB review. Note that declaring a project “exempt” from IRB supervision is not a decision that researchers can make on their own.
Strategies for Protecting Human Participants
Obtaining informed consent is crucial for conducting ethical research. You must inform those whom you invite to participate in your work what that participation will entail, what benefits it may bring to them, and what risks it may pose for them, and how you will manage, use, and share the information that they provide to you. You are required to obtain each participant’s written or oral consent to the arrangements you jointly decide upon.
Whenever you collect private and/or sensitive information from a project participant and that participant requests – or a law requires – that the information be kept confidential, you must make sure the information and the data generated from it are de-identified to protect the participant’s identity and privacy.
If you share your research data in a trusted digital repository, you can further protect participants’ privacy by restricting who may access the data and under what conditions they may do so.
Research data – even sensitive data – can be shared ethically and legally. The general guidance offered here is meant to help you think about how to design and carry out your research in ways that will facilitate such sharing. More specific guidance on conducting research ethically is provided by academic institutions, employers, funders, and professional organizations. We encourage you to become as informed as you can about the ethical conduct of research.