Research seminar 14 January 2019

This seminar was titled: 'Inclusive approaches and ethics in research: What can we learn from each other?' The first part focused on researchers' experiences in the field. The second part was opened with statements by ethics advisors, followed by a plenary discussion.

Part I Researchers’ experiences

Jana Vyrastekova (behavioral economist, Institute for Management Research): Procedures that deter participation

Jana specializes in inclusion in education. She told about a study she conducted at a school, in which she faced many obstacles due to ethical requirements. Especially when it came to informed consent during the stage of participant recruitment. Parents had to fill out a form of several pages. There was also a language barrier because the school insisted on communicating exclusively in Dutch. The form thus became very tedious and difficult for parents with a non-Dutch background (which was the main target group of the research). These issues resulted in a rather low response rate. Jana’s anecdote raised the following questions:

• How can a researcher work independently of ethics procedures while not violating them?
• How do you gain respondents’ trust without bothering them with complex procedures?

Lothar Smith (human geographer, Institute for Management Research): Where is the Global South?

Lothar argued that there is a lack of attention to developments in the Global South. He focused on three key concerns: beyond the state, engaging with scholars of the Global South, and ethical dogmatism.

1. Beyond the state. In research, nationality is generally used as ‘easy ethnicity’. This methodical nationalism leads to the assumption that all nationals are the same. This assumption is false, but very prominent in politics, often leading to unproductive solutions.

• Why do we use territorial delineation in our research? Is it just pragmatics?

2. Engaging with scholars of the global south. Lothar argues that this will result in getting a different, often illuminating, perspective. Researchers need to have the courage to let other people into their world. There is significantly more research being done in the global South by people from the global North than vice versa. This is problematic.

• Are we failing to acknowledge international linkages?

3. Ethical dogmatism. The digital age has made it possible (and ethics criteria have made it mandatory) to record everything. This has reached a point where the mantra has become ‘It is recorded, so it is real’ (implying that something that is not recorded is also less real). Although recording material is important, we have to be more critical in our legitimization of this material.

• Have we gone too far in the need for replication of information?

Maria van den Muijsenbergh (professor of health disparities, Radboud UMC): Giving a voice to all

Maria addressed meaningful engagement in different phases of research projects. Migrants (especially low- or illiterates) are often underrepresented in research. This is sometimes done on purpose because some migrants don’t speak Dutch, there are difficulties with recruitment, there is a lack of networks or information, or research is not culturally sensitive. Maria suggested a few ways to overcome these thresholds. Her main argument was that a personal approach is the most important thing in health care. For immigrant groups, this often means giving out oral information through key persons in the community. To reach these people, you have to visit places that are frequented by your target population (e.g. a mosque or supermarket). Participatory methods and maintaining frequent personal contact are the most efficient ways to keep people involved. A crucial problem here is that such contact often exceeds boundaries established by ethics criteria because people are sometimes not aware that it is part of the research and the information might be too sensitive (e.g. the use of WhatsApp).

• How do we include ‘hard-to-reach’ groups in research?

Hanna Murray-Carlsson (PhD student on elderly care practices, Institute for Management Research): Lost in translation

Hanna is a doing a PhD on elderly care, particularly in relation to migrants. She addressed the role of the researcher when doing participant observation. She used volunteering in an elderly day care center as an access point to her research subjects. However, her role was often unclear to the participants (they thought she was doing a ‘school project’ or writing a report), which raised ethical issues related to consent. People might give information that they are not aware is being published. She also told us about the pros and cons of having an interpreter. On the one hand, it is nice to work as a team and have someone else who helps ‘interpret’ the data – required that they know what the research goals are. On the other hand, some (key) information is always lost in translation. Questions raised by Hanna were mostly about other people’s experiences. Jana noted that interpreters can add value to your research, and it is important to be culturally sensitive. Maria added that translation should be done by a person who is involved in or familiar with the target community.

Part II Plenary discussion with ethics advisors

Ronald Tinnevelt (former chair of the ethics committees of the Faculty of Law and Nijmegen School of Management) and Anke Oerlemans (ethics advisor for Radboud UMC) offered a few opening statements followed by a plenary discussion.

Ronald talked about the issues related to transforming fundamental ethical principles into scientific research. He argued that researchers should have a ‘proactive awareness’ towards ethics and be willing to work within these parameters. It is also important to keep in mind that respondents are more than a source of data: they are people who have fundamental demands.

• Doing research in an ethically responsible way is not because the ethics committee asks us to do so, but because we as researchers want to do sound and responsible research.
• Researchers are primarily responsible, so they should have the time and resources to pay attention to ethics. Funding institutions should take this into account and give research ample time and resources for this.
• Beware that there is not (going to be) a golden standard. You, as a researcher, are in charge of developing a workable approach.

Anke added that the lack of migrant representation in research is a concern. She drew attention to two main problem areas in relation to migrant inclusion:

• Issues of recruitment.
• Issues of informed consent. (This can apply to Dutch natives as well.)

Most important issues that were raised in the seminar

1. Informed consent
2. Recruitment
3. Experiences with interpreters
4. The recording requirement (unfortunately we ran out of time and did not discuss this point)

Informed consent

Jana is looking for a simplification of informed consent, but that won’t solve the issue of responsibility for the research while at the same time needing approval for procedure (in response to Ronald’s statements). The procedures are shifting the responsibility from researcher to respondent. But if the respondent doesn’t understand the informed consent form, or if they don’t bother reading it, is it really consent? Why would you tire them with all this information (which Jana thinks is more important for the researcher than for the respondent)? Anke says that respondents have to make a voluntary and well-informed decision. You as researcher can make a document (maybe even a summary) available to them of the things that you think are important. The committees are more flexible than researchers might think. There is also the aspect of ‘seduction’: you have to not only inform people, but also get them interested in participating in your research. Pascal adds that oral communication is often the best solution when it comes to migrants. Ronald says that researchers should look at the basis of the requirements, and think about how to translate this to the respondents. There is a gap between what the ethics committee needs, and what the respondents need to know. It is suggested to make a (standardized) video with infographics (and subtitles if necessary), perhaps accompanied by a summarizing letter. Lothar adds that it is essential to communicate back to the ethics committees/funding bodies. If the demands are unreasonable to the extent that researchers can’t do their jobs, this needs to be reflected back to the people making these demands. Maria says that when researching vulnerable groups, you have to make sure that they are not recognizable. Sometimes making respondents anonymous is not enough. It can be helpful to give back to respondents (or their general population) what you have found, so it is not only for your own use.

Recruitment

Is reimbursement an ethics issue? It could be, because it could be people’s main incentive for participating. It also depends on the research context. If you’re doing participatory observation, you have already established a bond of trust and reimbursements are often not necessary.

Experience with interpreters

Anke names an example of having focus groups led and transcripted by interpreters, and then translated afterwards. The advantage is that there is no interruption, so there is a more natural flow in the conversation. The disadvantage is that you cannot guide the conversation and in the end you have a product on which you have little influence. Maria suggests that you can have a 30 minute break halfway to get an update on what the conversation is about and what points should be discussed (further) in the second half.