Uneasy Relations: Crime Ethnographies and Research Ethics

This chapter accentuates some of the reasons why crime ethnographies can face difficulties with the ethics review process, including prominent issues relating to informed consent, risk and harm, anonymity, and criminal behavior. Universities in most Western countries have established research ethics boards over the past twenty years responsible for assessing the ethical conduct of research. Qualitative research can fit poorly into the largely positivist ethics framework, resulting in an often-frustrating situation for ethnographers seeking to move ahead with their research. One paradox of this situation is that the ethics process itself seems poised to give rise to a subset of academic deviants in the form of crime ethnographers who may find that they are obliged to circumvent or disregard some formal ethical strictures in order to engage in ethnographic practices that otherwise seem uncontroversial or even innocuous.

How to navigate the application of ethics norms in global health research: reflections based on qualitative research conducted with people with disabilities in Uganda

Background As Canadian global health researchers who conducted a qualitative study with adults with and without disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation and implementation of this qualitative research raised specific ethical issues related to research participant privacy and the importance of availability and management of financial resources. Main body Our field experience highlights three main issues for reflection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research implementation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing financial support as a key aspect of financial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the significance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to financial availability and management. Conclusions Conducting research in resource limited settings and with study participants with different needs calls for a nuanced and respectful implementation of research ethics in a global health context. We recommend a greater integration in both the TCPS2 and NGRU of global health research, disability, and responsible conduct of research. This integration should also be accompanied by adequate training which can further guide researchers, be they senior, junior, or students, and funding agencies.

Just Because the Data Is There, It Doesn’t Mean It’s Yours to Take

In research conducted using Twitter data, informed consent has taken the back seat. This literature review examines the perspectives of users, researchers and research ethics boards to provide nuance and context to the issue. Users are generally unaware that their data can be taken for research purposes and that they have agreed to be studied within the platform’s terms of service. This is concerning for both researchers and users alike, as it continues to blur the line of public and private information. Users want to be informed when they are being studied. When informed consent is not obtained, researchers are not respecting the data and the humans who created it. If researchers were required to obtain informed consent when engaging with Twitter data, the resulting research would be more ethical and protect everyone involved: the researcher, the user, and the university.

A New Era of Indigenous Research: Community-based Indigenous Research Ethics Protocols in Canada

Indigenous communities across Canada have established principles to guide ethical research within their respective communities. Thorough cataloging and description of these would inform university research ethics boards, researchers, and scholars and facilitate meaningful research that respects Indigenous-defined ethical values. A scoping study was conducted of all relevant peer-reviewed literature and public-facing Indigenous research ethical guidelines from First Nations, Metis, and Inuit communities and organizations in Canada. A total of 20 different Indigenous research ethics boards, frameworks, and protocols were identified. Analysis resulted in three key themes: (1) balancing individual and collective rights; (2) upholding culturally-grounded ethical principles; and (3) ensuring community-driven/self-determined research. Findings demonstrate how employment of Indigenous ethical principles in research positively contributes to research outcomes.

Precarious Times, Professional Tensions: The Ethics of Migration Research and the Drive for Scientific Accountability

How should migration scholars navigate tensions between our ethical responsibilities to research participants and growing “open science” calls for data transparency, replication, and accountability? We elaborate a three-step process to navigate these tensions. First, researchers must understand core principles behind open-science initiatives and the mandates of research ethics boards, especially those related to privacy, confidentiality, and protection from harm, and take them seriously. Second, migration researchers must think beyond routinized or mandated procedures to carefully consider the unique vulnerabilities of migrants in their study, which depend on socio-political context. Third, if vulnerabilities are significant, migration researchers should modify (or challenge) procedures elaborated in the name of open science or routinized research ethic board mandates, if inappropriate for their study. We, thus, encourage migration scholars to engage with open-science advocates but also to educate colleagues on migrants’ vulnerabilities and to double-down on data security, including vis-à-vis government authorities, as evolving technologies continue to change research practices.

A brief and personal history of ‘what’s in a name’ in reproductive genetics

Although Juliet’s claim, ‘What’s in a name? That which we call a rose by any other name would smell as sweet’, may apply to family names, ‘that which we call’ embryos and procedures in reproductive genetics often smell sweet because the names were created to perfume not-so-sweet-smelling practices. Reproductive-genetic scientists and clinicians, including myself, have used perfumed names to make our research smell sweet for research ethics boards, research grant funders, government regulators, hospital administrators and the general public. The sweet-smelling names in reproductive genetics explored here include ‘pre-embryo’, preimplantation genetic ‘diagnosis’, ‘normal’ embryo, ‘suitable’ embryo, ‘healthy’ embryo, preimplantation genetic ‘testing’, ‘non-invasive prenatal testing’, ‘donation’, and most recently ‘mitochondrial replacement therapy’, a sweet-smelling name for germline nuclear transfer prohibited in antireproductive cloning legislation in most countries. In order for informed choices to occur for women who come to clinicians for information regarding reproductive genetics, and for transparency of scrutiny by research ethics boards, governmental regulators and the general public, it is essential that we consider the real meaning of sweet-smelling names in reproductive genetics.

What’s the protocol? Canadian university research ethics boards and variations in implementing Tri-Council policy

This article is concerned with the differences in REB policy and application processes across Canada as they impact multi-jurisdictional, higher education research projects that collect data at universities themselves. Despite the guiding principles of the Tri-Council Policy Statement 2 (TCPS2) there is significant variation among the practices of Research Ethics Boards (REBs) at Canada’s universities, particularly when they respond to requests from researchers outside their own institution. The data for this paper were gathered through a review of research ethics applications at 69 universities across Canada. The findings suggest REBs use a range of different application systems and require different revisions and types of oversight for researchers who are not employed at their institution. This paper recommends further harmonization between REBs across the country and national-level dialogue on TCPS2 interpretations.

What’s the protocol? Canadian university research ethics boards and variations in implementing Tri-Council policy

This article is concerned with the differences in REB policy and application processes across Canada as they impact multi-jurisdictional, higher education research projects that collect data at universities themselves. Despite the guiding principles of the Tri-Council Policy Statement 2 (TCPS2) there is significant variation among the practices of Research Ethics Boards (REBs) at Canada’s universities, particularly when they respond to requests from researchers outside their own institution. The data for this paper were gathered through a review of research ethics applications at 69 universities across Canada. The findings suggest REBs use a range of different application systems and require different revisions and types of oversight for researchers who are not employed at their institution. This paper recommends further harmonization between REBs across the country and national-level dialogue on TCPS2 interpretations.

Person-Oriented Research Ethics and Dementia:The Lack of Consensus

Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.