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Types of Research, Participants, Data

This section of the Framework covers a range of topics where specific ethical advice is available. Types of research include participatory, mixed-methods, and community-based research. Types of participants include vulnerable and elite participants. Types of data include quantitative, qualitative, and big data.

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From the Asian Bioethics Review: Delivering a Practical Framework for Ethical Decision-Making Involving Big Data in Health and Research – editorial along with several related papers available on Open Access.

Ethics in community-based participatory research:

The Centre for Social Justice and Community Action (CSJCA) has a particular interest in the ethical issues that arise in research that is community-based and participatory. Ethics relates to doing good and harm; how people are treated; and who benefits from research. In Community Based Participatory Research (CBPR) there may be particular questions about how to share power and resources, and create mutual respect, for example: Who owns this information? Are we being fair? Is this an equal partnership? These web pages focus on CSJCA’s work on ethics, including a guide to ethical principles and practice, case examples, films, articles and a range of other downloadable resources for use by researchers and students based in communities and universities, and anyone interested in planning or evaluating CBPR.

“To engage in multimethod and mixed methods research (MMMR) requires working at the borders of disciplines and navigating across a turbulent MMMR landscape characterized by deep epistemic, theoretical, and methods divides.”

Additional ethics concerns arise from working with potentially vulnerable people. Vulnerability may be defined in different ways and may arise as a result of being in an abusive relationship, vulnerability due to age, potential marginalisation, disability, and due to disadvantageous power relationships within personal and professional roles. Researchers will need to assess potential vulnerability within the context of the research, in terms of potential consequences from their participation (immediate and long-term) or lack of positive impact where this is immediately needed or expected. Researchers should make the participants aware of the limits to confidentiality when eliciting consent, and decide whether verbal or written consent will be more appropriate and protective of the participants’ interests.

Elite interviews are interviews with senior people who may be chosen for inclusion in a research study because of their public role (e.g. senior government officials, Ministers, Members of Parliament, celebrities etc.), or because they represent views of their general position (e.g. judges, newspaper editors, tax lawyers etc.) or leadership role (e.g. Chief Executives of large companies).They are assumed to often be difficult to access and raise problems of confidentiality against public interests.

A PowerPoint presentation explaining how NatCen gathers data that will be used for quantitative analyses.

Qualitative data collection brings complex ethical issues to the surface because of the personal nature of this activity. This chapter looks specifically at the ethics issues in qualitative data collection.

“Research Ethics in the Big Data Era: Addressing Conceptual Gaps for Researchers and IRBs” (Downloadable pdf by Michael Zimmer).